[anonymous] See an endocrinologist, or no?

[gardenmom5]

I'm posting this for an established boardie who would like to remain anonymous. 

I'm wondering whether I should make an endocrinologist appointment, do something else, or do nothing. I'm in my early 40s. At a recent physical, my thyroid was enlarged. It only bothers me once in a while as long as nothing touches it. An ultrasound shows 2 small modules that appear benign. My TSH is 2.17, which I understand to be quite good. So my doctor's office says no further action is needed.

On the other hand, I'm tired a lot and have been for a long time (even though I go to bed early, no screens in the bedroom, etc.), and I have trouble staying warm. I have lost weight, going from a barely normal BMI to slightly underweight as an exercise-averse, chips-and-guac enjoying SAHM--my rings are falling off my hand if I'm not careful. My mom had her thyroid removed several years ago (nodules got too big & interfered with swallowing, etc.). A child of mine has celiac disease, meaning we have at least one wonky autoimmune gene going on somewhere; I've been on a strictly gluten-free diet for a year, so I don't think celiac would explain my low weight now. My periods have always been 8 days (cycles about 26 days nowadays) and it took me a year to get pregnant in my late 20s even though I'd done the temperature-charting thing for a couple of years before starting to try. My blood pressure is just below normal. I've verified that our salt is iodized. If I do have a thryoid problem, I don't even know if it's hyper or hypo.

I did a sleep study and have mild apnea--I'll talk to the sleep doctor about options next month. I snore even tough I don't sleep on my back.

Child care is a nuisance for doctor appointments.

I'm planning to try a selenium supplement.

Would you...

• wait and see if apnea treatment helps the tiredness & decline to do anything further about thyroid unless I have further issues?
• decide that my doctor doesn't have a great track record anyway (often takes two visits to resolve something) and look for an endocrinologist?
• do something else, which the Hive in its wisdom shall recommend?

Thanks!

[gardenmom5]

my response . . .
I'm generally not keen on endos, they're not the best for regular thyroid treatment. and a tsh of 2.17 - is decent.  it's not what should be considered "good".  that could even be considered mildly hypothyroid.  (it's fairly common for NDT patients who have FreeT3 and FreeT4 numbers in the optimal range, to have TSH of =< 1.  - and I'm in the camp that considers optimal FreeT3 and FreeT4 numbers more important than TSH for getting a good rx dose.  I'm on a couple thyroid groups that generally detest endos  for regular thyroid treatment. - because they will more often than not, keep thyroid patients hypothyroid. (and feeling lousy).

HOWEVER - you have two nodules on your thyroid, and I would consider that a game changer.  was it your PCP who said no further treatment was needed?  or an Endo?  I would want more information about the nodules.

for regular thyroid treatment - most (NOT all) Naturepaths do a better job.  I would also suggest reading "Stop the thyroid madness"  (they've educated a lot of drs about thyroid)

thyroid doesn't function in a vacuum - they give a list of what tests you need to know, and how the different areas will affect your thyroid function.  they have a FB group, and you can ask questions there.  their goal is to educate - so you know what questions, what tests, etc. you need to know about when you go to your dr.

[gardenmom5]

from anonymous:

I've never been to an endocrinologist; it's my primary doctor who says nothing further is needed.  . . . . . .

 

ME.  I'm weary of pcps that won't refer out, especially when a patient is outside their experience/specialty.    

find an endo, or an ent.

Edited November 14, 2019 by gardenmom5

[wintermom]

I'm confused. Why are people so worried about endocrinologists? I work for one, and she's amazing, as are her colleges. They do specialize in specific areas, though, so you may need to investigate to find one that has expertise in thyroid issues.

I'm in Canada, but there is a lot of great research in endocrinology coming out of the US. 

[Pawz4me]

With an enlarged thyroid and nodules I think I'd want to see an endocrinologist.

(And I say that as someone with Hashi's who has always felt perfectly comfortable allowing my PCP to handle it. Just posting that so you know I have some familiarity with thyroid issues.)

Also, did your PCP not do a full thyroid panel -- T3 and T4 as well as TSH? You really do need the full panel, at least while in the investigative stage. I've been at this for several years now, and I'm fine with just having TSH tested as long as I'm feeling okay. But for an initial diagnosis you certainly need the full panel.

[KathyBC]

I'd want a referral to an endocrinologist or internist, for a more complete panel of bloodwork to rule out thyroid a bit more conclusively than has been done. Your PCP could probably even do that, but is displaying a typical laissez-faire attitude that is not putting your optimal health first.

[Bambam]

I'd go see an endo or an ENT. We had a lady here who had similar troubles, but her general dr. just ignored it. After many years (more than 5, I can't remember how long), she finds out she has thyroid cancer. It probably isn't that, but I'd get it checked out by an expert. I know child care for doctor's appointments can be a pain, but you need to find an answer and get it resolved. Make your health a priority. 

[BeachGal]

Getting more thorough info from someone about your thyroid would be good.

However, don’t ignore the sleep apnea, either, even if it’s mild. It can lead to other serious health problems. I’d want to work with someone who can help improve it. Maybe a respiratory therapist. The culprit could be something like a large uvula—that dangly thing on the roof of your mouth at the back of your throat. Whatever is the cause, you really don’t want interrupted sleep or low levels of oxygen while you sleep.

[ktgrok]

I'd also want thyroid auto antibodies checked. 

The weight loss is more concerning to me, you need fun lab work done.

[Ellie]

5 hours ago, gardenmom5 said:

I'm posting this for an established boardie who would like to remain anonymous. 

I'm wondering whether I should make an endocrinologist appointment, do something else, or do nothing. I'm in my early 40s. At a recent physical, my thyroid was enlarged. It only bothers me once in a while as long as nothing touches it. An ultrasound shows 2 small modules that appear benign. My TSH is 2.17, which I understand to be quite good. So my doctor's office says no further action is needed.

On the other hand, I'm tired a lot and have been for a long time (even though I go to bed early, no screens in the bedroom, etc.), and I have trouble staying warm. I have lost weight, going from a barely normal BMI to slightly underweight as an exercise-averse, chips-and-guac enjoying SAHM--my rings are falling off my hand if I'm not careful. My mom had her thyroid removed several years ago (nodules got too big & interfered with swallowing, etc.). A child of mine has celiac disease, meaning we have at least one wonky autoimmune gene going on somewhere; I've been on a strictly gluten-free diet for a year, so I don't think celiac would explain my low weight now. My periods have always been 8 days (cycles about 26 days nowadays) and it took me a year to get pregnant in my late 20s even though I'd done the temperature-charting thing for a couple of years before starting to try. My blood pressure is just below normal. I've verified that our salt is iodized. If I do have a thryoid problem, I don't even know if it's hyper or hypo.

I did a sleep study and have mild apnea--I'll talk to the sleep doctor about options next month. I snore even tough I don't sleep on my back.

Child care is a nuisance for doctor appointments.

I'm planning to try a selenium supplement.

Would you...

• wait and see if apnea treatment helps the tiredness & decline to do anything further about thyroid unless I have further issues?
• decide that my doctor doesn't have a great track record anyway (often takes two visits to resolve something) and look for an endocrinologist?
• do something else, which the Hive in its wisdom shall recommend?

Thanks!

If her doctor is diagnosing her based on TSH, then she's in trouble. And FTR, it's better if TSH is under 2.5. She needs a doctor--and it doesn't have to be an endo, who will be well trained in treating diabetes but probably less educated regarding thyroid--who will test not only TSH but also Free T3, Free T4, and Reverse T3. And then that doctor needs to treat her based on how she feels, not just on the labs. IOW, she needs a new doctor now. Her regular doctor is not doing the job.

Also FTR, if my TSH were was 2.17, I would be hypothyroid and need medication. Which I do, because I was undermedicated for 20 years by well-meaning doctors who said my TSH was "in range," and only prescribed enough synthetic meds to keep me functional. By the time I saw a doctor who actually knew what to do, my poor thyroid had almost no function at all; I now take 300 units of a natural desiccated thyroid (NatureThroid).

If she has nodules, then she most likely has Hashimoto's, which is an autoimmune disease that affects the thyroid.

She might not know that sleep apnea is a common symptom of thyroid disease.

Have her go to this site and read everything: Stop the Thyroid Madness. Also, if she does FB, have her check out Hashimoto's 411.

[J-rap]

Well, I have some strong opinions on this.  I went through the exact same thing.  Except my doctor told me to see an endocrinologist, which I did.  My TSH levels were perfect, and my nodules appeared benign.   But I ended up having a biopsy, and that was mixed.  The endocrinologist wanted to remove the nodules under surgery just to make extra sure everything was okay, with the possibly of removing the thyroid.  It turns out, I had pre-cancer cells in the nodules.  They removed the entire thyroid.  I also was diagnosed with hashimotos.  

That was over 20 ago now!  I didn't even know I was tired until I had my thyroid removed and went on synthroid.  It turns out that my thyroid hadn't been working well so I was really tired but had begun to think it was normal.  Once I started synthroid, I felt great!  I've felt great for over 20 years now.   I'm not saying you'll need to have your thyroid removed, but I'd definitely meet with an endocrinologist to make sure nothing is being missed.

[BeachGal]

If childcare is a nuisance, would those of you knowledgeable about thyroid problems recommend something like Walk In Labs? She could then just go online, order a thyroid panel of some sort and schedule the test at a time that works for her. A few states don’t allow this but if hers does, would that be a place to start?

@Ellie, that is interesting about the sleep apnea and thyroid connection.

[gardenmom5]

4 hours ago, wintermom said:

I'm confused. Why are people so worried about endocrinologists? I work for one, and she's amazing, as are her colleges. They do specialize in specific areas, though, so you may need to investigate to find one that has expertise in thyroid issues.

I'm in Canada, but there is a lot of great research in endocrinology coming out of the US. 

I'm on a thyroid group that draws a lot from the UK - endos are generally disliked (if not worse) because they have the reputation of under treating thyroid, leaving patients hypo and feeling terrible. they have a rep of only caring about the TSh (a pituitary hormone), and if prescribing meds, - it's T4 (a storage hormone) only.  even though T3 is the active hormone, and it's not uncommon for thyroid patients to not adequately convert T4 -> T3. - leaving them hypothyroid.

a lot of thyroid patients from the US and the UK can tell horror stories of how they were treated.  I had a pcp LIE to me about what tests she was running, and leaving my quite hypothyroid.  she also required me to come in every three months for blood work and a new rx.  she would only give me a rx if I came in for blood work.  (cash cow for her.)  I only started feeling better after I left her, and had T3 and adrenal support added to what I was taking.

[Ellie]

21 minutes ago, BeachGal said:

If childcare is a nuisance, would those of you knowledgeable about thyroid problems recommend something like Walk In Labs? She could then just go online, order a thyroid panel of some sort and schedule the test at a time that works for her. A few states don’t allow this but if hers does, would that be a place to start?

@Ellie, that is interesting about the sleep apnea and thyroid connection.

She could do that. But then she'd still have to find a doctor who would accept the results, and who would treat her properly. And it's possible that she can help herself quite a bit with diet and supplements and whatnot, if she hasn't gone too long without proper treatment.

I had mild sleep apnea, but now that I"m medicated properly, it is gone.

Be sure that she checks out the links I included.

[Ellie]

6 hours ago, wintermom said:

I'm confused. Why are people so worried about endocrinologists? I work for one, and she's amazing, as are her colleges. They do specialize in specific areas, though, so you may need to investigate to find one that has expertise in thyroid issues.

I'm in Canada, but there is a lot of great research in endocrinology coming out of the US. 

Not all endos know how to treat thyroid issues properly. Happily, I found one who treats me, not my labs (although he understands the difference between "normal" and "optimal" lab results); for a minute he was not going to be part of my insurance group and I saw another endo, who told me that she only prescribes Synthroid. I will never take Synthroid again. Happily, my endo came back and I didn't have to suffer through interviewing a new endo.

Anyway, the average number of doctors that those with thyroid disease see before finally being treated properly is five.

[wintermom]

13 hours ago, Æthelthryth the Texan said:

I'm not worried about an endo- I just said that an ENT is an alternative. It doesn't have to be an endocrinologist assuming there is an ENT she can find who is comfortable with thyroid issues. I was just emphasizing, like GardenMom, that imo it would be better if she saw some sort of specialist. I have preferred my ENT over my Endocrinologist, but that is a single personal thing, and not a generalization. 

 

That's interesting. So an Ear, Nose and Throat specialist is seen to have expertise in thyroid due to the gland's location in the neck? Again, honest question. I have only the experience of my endo doctor who's expertise is bone metabolism. This doesn't make sense, either, unless you know about the underlying issues with what can cause some bone diseases.

[TravelingChris]

13 hours ago, Æthelthryth the Texan said:

I'm not worried about an endo- I just said that an ENT is an alternative. It doesn't have to be an endocrinologist assuming there is an ENT she can find who is comfortable with thyroid issues. I was just emphasizing, like GardenMom, that imo it would be better if she saw some sort of specialist. I have preferred my ENT over my Endocrinologist, but that is a single personal thing, and not a generalization. 

 

Thank you for this suggestion.  I am not anonymous but there is a shortage of endocrinologists in this town but I can get into my ENT doctor quickly.  I am not anonymous but I have the same problem- lump or lumps on my thyroid, unexplained weight losses and gains, and a fatigue/brain fog level that my rheumatologist beklieves cannot be explained by lupus alone since I am on so many immunosuppressants.

Edited November 15, 2019 by TravelingChris

[Ellie]

2 hours ago, TravelingChris said:

Thank you for this suggestion.  I am not anonymous but there is a shortage of endocrinologists in this town but I can get into my ENT doctor quickly.  I am not anonymous but I have the same problem- lump or lumps on my thyroid, unexplained weight losses and gains, and a fatigue/brain fog level that my rheumatologist beklieves cannot be explained by lupus alone since I am on so many immunosuppressants.

I'm not a doctor and I don't play one on TV, but yeah, it could totally be thyroid. In fact, if there are nodules on your thyroid, it is most likely Hashimoto's, which, it turns out, your rheumatologist can treat, because it's an autoimmune disease.

[wintermom]

2 hours ago, Æthelthryth the Texan said:

My ENT told me that she can treat anything from the neck up. She's a surgeon as well, so maybe that's part of it- I'm not 100% they all do. But I've been dealing with this like 5 years now and know she just has handled it a lot better than the Endo did. She is who initially found the nodules, but I actually went to an Endo of my own accord thinking *he'd* be the specialist, even though she told me she could treat it. I went back to her a year later and have stuck with her since. 

I had similar experience to TravelingChris- I don't know know what the difference is, but the Endo offices around here are insanely packed. Most have been taken over by corporate practices and they are churning in the patients as fast as they can, whereas my ENT is a lot more personal, less crowded, more time with patient, etc. My guess is it comes down to office culture and maybe what type of insurances they accept, but I don't know. Just a suspicion. 

Also, fwiw Anonymous,  I have multiple nodules and I do NOT have Hashi's. so just because you have nodules, doesn't mean you do. Thyroid nodules are EXTREMELY common, especially with age, and especially in women. Hashi's is associated with hypothyroidism, but nodules don't equal hypo by default. But all of that is why a specialist is good- I always think second opinions are good if you can get/afford them. 

Could be overwhelmed with diabetes patients. Our pediatric clinic is, and they get pretty testy about us bone health researchers using their space.

[gardenmom5]

I have a last message from the boardie.

 

 Thanks, everyone. I have moved my apnea appointment up and found a local ENT I will want to see after that. I appreciate all the responses.

[Nicholas_mom]

Good to hear.  I was going to say Apnea appt first, too....because my dh would fall alseep as soon as he sat down.  He was tired and grumpy and fall asleep during his sessions with clients (he is a psychotherapist).  And the fact you did have your thyroid evaluated and the doc said no further action.  Also, did you look up symptoms for thyroid issues?  It also includes very, dry skin, fatigued and alot of other symptoms, as well.  

[Vanchy]

I have thyroid nodules. One was covering the right lobe of my thyroid (5cm long). Biopsy was negative. Endocrinologist said that is genetic and it's autoimmune disease. He also said that nodule will not shrink. I asked him if I should change diet or lifestyle, and he said no. I was desperate to find the solution. I asked Google and it pointed to Anthony William (@medicalmedium on Instagram), and my life was changed forever.

Six months later I did another ultra sound and it showed that the biggest nodule shrank 1.6cm. Some smaller nodules were gone. The only thing I did was.... I changed my diet. Started following Anthony's protocol from his book "Healing Thyroid". My endocrinologist was a bit disappointed with the results, he acted kinda offended. He did not ask what I was doing, but I told him anyway, 😄 He told me:"I guess that you won't need me anymore. From now on you gonna see my NP." I replied:"I don't think so, and left the office". Found a new doctor who supports my efforts to get better.

 

Edited November 22, 2019 by Vanchy

[guilfordlake]

I’m not anonymous but I am so grateful for this thread. I was just diagnosed with hypothyroidism. My TSH  was 9.61 & my doctor hasn’t been much help beyond telling me to take the thyroid medication she prescribed. This thread gives me some places to look for further information, so thank you 😊 

[Pawz4me]

8 minutes ago, guilfordlake said:

I’m not anonymous but I am so grateful for this thread. I was just diagnosed with hypothyroidism. My TSH  was 9.61 & my doctor hasn’t been much help beyond telling me to take the thyroid medication she prescribed. This thread gives me some places to look for further information, so thank you 😊 

For many people with hypothyroidism that's really all that's needed. I was diagnosed five and a half years ago and have never needed to pursue any treatment beyond levothyroxine. I call it my Fountain of Youth. I know/have known quite a few people IRL who deal with thyroid issues, and none have had any of the horror stories one often hears online. I'm not doubting that some people really do have trouble getting things regulated, but I think they're more the exception than the rule. I hope the medication works well for you!