Understanding thyroid, hive help needed

[Eos]

Please help if you are able.  Dd (who is also Type 1 diabetic) has had a rising thyroid number over a few years which is now out of normal range.  She has all the classic symptoms - cold intolerance, brain fog, weight gain, weepy - but her TSH is 5.9 and the Swiss doc she just consulted is pretty dismissive, says "it's not 10 or 12, so you're completely normal." 

She has no interest in treating with only diet or complementary medicines as she already uses insulin to stay alive.  I'm sure she would be happy to know some helpful diet and other tips but is not anti-lifelong medication.  Hypothyroid runs on both sides of our families.

Thank you for knowledge and suggestions.

 

 

[Martha in GA]

Yikes! Can she consult a different doctor? A TSH of 5.9 would definitely make me feel fatigued! Also, a TSH doesn't show the whole story. Could she have a whole thyroid panel done? Free T3 and Free T4, and maybe check to see if she has Hashimotos with an antibody test? Here is a list of tests and why:  https://www.restartmed.com/hashimotos-blood-test/

Has she had her Vitamin D levels checked? My endocrinologist suggested selenium for thyroid support. And, I know you said no diet stuff, but many people feel better with removing wheat and/or dairy. But, YES, she needs medication (I take Synthroid, but others prefer more natural thyroid medication, which I am not completely up on).

Good luck to her.

[Pawz4me]

She really needs a full thyroid panel. It might give enough "ammo" to convince her doctor to put her on medication. With a TSH of 5.9 and classic symptoms my guess is that her T3 and/or T4 will be out of range, too. And I base that guess on the fact that she's having symptoms. IME that seems to be the key. My TSH was (IIRC) 7.9 when I was diagnosed and I had many of the classic symptoms plus some horrid, bizarre/rare ones and truly felt like I was probably dying. My other numbers were out of range, too. But conversely, DH's TSH stayed around 15 for well over a year, his T3 and T4 were in range and he had no symptoms at all. It was only after his T3 also went wonky that he started having (very mild) symptoms.

[rutheart]

I had many, many hypothyroid symptoms for over a decade. As an example, even if I had wanted to work outside the house, I couldn't because I had hypermenorrhagia at unpredictable times. Despite it interfering with my life so much, docs (PCPs and endocrinologists) refused to treat me until my TSH was "high enough". About 4 years ago, my TSH was finally recorded at just over 5 and my (new) PCP agreed to let me try levothyroxine. At that point, my energy levels were so low, even the thought of having to stand up made me cry. My point is that even with a barely out of range TSH, symptoms can be a lot worse than doctors would believe. Now that I am treated, I have more energy in my 40s than I did for all of my 30s and most of my 20s. I have not hemorrhaged in the last year, and finally feel like I could hold a job once my youngest has graduated.

I recommend your daughter get a second opinion. If the doc is that dismissive of her symptoms, even if other bloodwork revealed a need for treatment, they wouldn't listen when dosage needed to be adjusted.

[Ann.without.an.e]

I think it depends on her body and whether she also has the autoimmune thyroid factor. From our experience (strong family history and presence) if it is autoimmune in nature then you will feel symptomatic at a lower TSH. I stop having periods when mine hits a 4 TSH. If there is no autoimmune antibodies then there isn't as much harm staying at a higher TSH if you'd like but what's the point?  If you're symptomatic then why not feel better. 

I would have her request a full thyroid panel and the antibodies test. 

Edited October 14, 2021 by Ann.without.an.e

[gardenmom5]

"completely normal"  =/= OPTIMAL.

Even in the US - docs which still rely on only the TSH are medicating at 4.  (TSH is a pituitary hormone, not a thyroid hormone.)

Numbers that can give a much better picture are Free T3 and Free T4 (must be free, not total.  you want to know what is available.)

[Ellie]

4 hours ago, Harpymom said:

Please help if you are able.  Dd (who is also Type 1 diabetic) has had a rising thyroid number over a few years which is now out of normal range.  She has all the classic symptoms - cold intolerance, brain fog, weight gain, weepy - but her TSH is 5.9 and the Swiss doc she just consulted is pretty dismissive, says "it's not 10 or 12, so you're completely normal." 

She has no interest in treating with only diet or complementary medicines as she already uses insulin to stay alive.  I'm sure she would be happy to know some helpful diet and other tips but is not anti-lifelong medication.  Hypothyroid runs on both sides of our families.

Thank you for knowledge and suggestions.

She should see another doctor immediately if not sooner, as her current doctor is clearly not competent to treat thyroid issues. A TSH that high indicates a pretty severe hypothyroid condition. Although she *might* be able to treat the thyroid without medications, she should at least know what her thyroid health is, and TSH alone is not enough (although it is an indicator of a problem). She needs Free T3 and Free T4, and Reverse T3 couldn't hurt.

There is nothing wrong with taking a life-long medication. If your thyroid stops working, you're going to need to replace the hormones, and it is not likely that the thyroid will regenerate itself.

My best recommendation is Stop the Thyroid Madness.

[prairiewindmomma]

She needs to know if she has thyroid antibodies. Hashimoto's Disease is autoimmune, and has genetic ties. If there are thyroid issues genetically in the family, she really needs to know if she also has anti-TPO antibodies.  Because Hashimoto's is autoimmune, medicating thyroid down to around 1.0-2.5 is the ideal range to suppress the autoimmune attack. If it continues, her thyroid will eventually die and she will need full replacement hormone therapy.

There is no diet that can stop Hashimoto's.  Eating GFCF can help some people feel better, but often for other reasons. 

If she has Hashimoto's, she is also at a higher risk for early miscarriage if her thyroid is not managed. My endocrinologist and perinatologist had me document my pregnancies and start thyroid tests at 6 weeks and I often required regular thyroid dose changes in order to successfully carry pregnancies.

The Swiss doctor is an idiot. There are a lot of American idiot doctors too.  She really needs to find someone competent, like an endocrinologist. I'm not sure how the Swiss system of referrals works, but depending on the cost, this may be worth paying out of pocket for.

****Also, because she is T1D, her odds of having Hashimoto's are higher, statistically.  She will need to keep an eye out for other autoimmune issues in the future, because they tend to pop up more.****

[Shoeless]

Yeah, she needs a new doctor. I function best when my TSH is around 1.5-2. A TSH of 5.9 would leave me profoundly sick and unable to function at all. I have Hashimotos disease, so I will be on thyroid meds for life. There is no diet that will regrow my thyroid that my immune system destroyed. 

Diet will support her health, but she needs medication. She needs a new doctor right away.

Edited October 14, 2021 by MissLemon

[Eos]

Thank you all for these very helpful replies. 

7 hours ago, Martha in GA said:

Has she had her Vitamin D levels checked?

Yes, she's chronically low and takes it daily.

6 hours ago, rutheart said:

Despite it interfering with my life so much, docs (PCPs and endocrinologists) refused to treat me until my TSH was "high enough"

Ugh.  This.

2 hours ago, prairiewindmomma said:

The Swiss doctor is an idiot.

 

4 hours ago, Ellie said:

She should see another doctor immediately if not sooner,

This, and the above.  After I read these replies we spoke again and she ended up calling her FNP/diabetes educator here in the States.  Long story short, the nurse who answered the call was pretty shocked that the doctor had said he wouldn't treat and told dd she personally feels horrible when her own TSH is over 3.  She told dd their office can most likely do a phone consult with the endocrinologist and then prescribe, and I will pick up and send the meds to her.  Dd also had the Swiss doctor's office draw a full thyroid panel, and her stateside FNP can use that.  Hopefully soon she'll have answers and treatment and thank you all again for your wisdom and encouragement. 

3 hours ago, prairiewindmomma said:

She needs to know if she has thyroid antibodies. Hashimoto's Disease is autoimmune, and has genetic ties. If there are thyroid issues genetically in the family, she really needs to know if she also has anti-TPO antibodies.  Because Hashimoto's is autoimmune, medicating thyroid down to around 1.0-2.5 is the ideal range to suppress the autoimmune attack. If it continues, her thyroid will eventually die and she will need full replacement hormone therapy.

There is no diet that can stop Hashimoto's.  Eating GFCF can help some people feel better, but often for other reasons. 

If she has Hashimoto's, she is also at a higher risk for early miscarriage if her thyroid is not managed. My endocrinologist and perinatologist had me document my pregnancies and start thyroid tests at 6 weeks and I often required regular thyroid dose changes in order to successfully carry pregnancies.

The Swiss doctor is an idiot. There are a lot of American idiot doctors too.  She really needs to find someone competent, like an endocrinologist. I'm not sure how the Swiss system of referrals works, but depending on the cost, this may be worth paying out of pocket for.

****Also, because she is T1D, her odds of having Hashimoto's are higher, statistically.  She will need to keep an eye out for other autoimmune issues in the future, because they tend to pop up more.****

 

After reading some more links and info, I am predicting her antibody test will be positive.  She always feels better when she goes gluten and dairy free but it's kind of a low-grade thing that doesn't bother her enough to fully cut it all out.

[Ellie]

3 hours ago, Harpymom said:

After reading some more links and info, I am predicting her antibody test will be positive.  She always feels better when she goes gluten and dairy free but it's kind of a low-grade thing that doesn't bother her enough to fully cut it all out.

Some people are really helped by changing their diets; some didn't even realize how bad they were until they felt better. 🙂
.
Many Hashimoto's sufferers felt so much better when they did the Autoimmune Protocol. It's an elimination diet that targets foods which are known to be problematic: eggs, dairy, all grains (all grains, not just gluten, such as corn), nuts/seeds, nightshades, beans/legumes. Those foods are eliminated for a month, then added back in one at a time.

 

[PeterPan]

Yup, like the others, I'd be looking for a new doc. My doc takes my TSH below 2.0 and that 1.5-2.0 is a sweet spot for me. Demand a dessicated thyroid product, not just synthroid. 

Fwiw, I did the kelp/iodine thing for years and am SO much happier on a nice dessicated thryoid med. The trick is to take it at a consistent time *away from food and other meds*. I take mine at midnight before I go to bed. That gives me 4 hours after I eat and plenty of time for it to absorb before I take my morning supplements. 

Edited October 14, 2021 by PeterPan