Fatigue, hair loss, pain - typical Hashimoto but endocrinologist says all is fine

[Kapibara]

Hello everybody,

Maybe you have a similar experience with your health care provider as only the holy, as I call it, THS is relevant in determining your illness. If that is within the exceptable range then you ARE ok and that's it. But I don't feel ok, I am sooo tired all the time, almost bald /at the age of 45/, have pain everywhere, brain fog, chills at night, feel cold etc. I have already visited a whole score of doctors - angiologist, rheumatologist, gastroenterologist, neurologist...thankfully they did not find anything. So I am back to the only condition I've been treated for from 2017 - autoimune hyphothyroitism. I take Euthyrox 100 /Merk/, supplement with vitamins and minerals, but I am at my witts end. My recent aTPOs are 300. Blood work is ok, have tendency for anemia. And of course I am lactose intolerant. One month ago I started AIP autoimmune protocol , so I have been eating only meat, veggies and some fruit. I should start reintroducing food but I don't want to as there was a small improvement to my energy levels. If you have any tips and want to share, I'd be happy.

[SeasideSusie Remembering]

kapibara

What are your current results (including reference ranges) for TSH, FT4 and FT3? Your symptoms suggest undermedication.

I have a GP who only considers TSH regardless of where my FT4 and FT3 are and we have had endless discussions about this, she refuses to discuss FT4/FT3 because it's only TSH that is relevant, I refuse to reduce my dose because FT4/FT3 are in range. It's not easy but I just don't see her about my thyroid now, preferring to see the Advanced Nurse Practioner who is fine with a suppressed TSH as long as FT4/FT3 are within range, I am very fortunate in this respect and know if he ever leaves I will be up a gum tree!

[pennyannie]

Hello Kapibara and welcome to the forum ;

If you scroll up you will see Thyroid UK logo and the charity who supports this amazing forum.

First and foremost look on the Thyroid UK website and read of the private companies who can undertake the TSH, T3, T4 and antibody blood tests for you and if you can afford it include the ferritin, folate, B12 and vitamin D blood tests in the bundle you order.

Once with the blood test results post on here along with the ranges and you will be offered considered opinion and advice on anything that looks " amiss " , and how you can turn some things around for yourself, return to better health, and be better informed to take the matter further with the appropriate medical professional.

It does seem in primary care that many doctors only have a TSH blood test on which to dose and monitor thyroid health conditions and whilst this may suit some, there are thousands of us on the forum having to do private blood tests which we then " throw up on here " for advice and suggestions from a team of dedicated people who definitely " know their onions ".

[SlowDragon Administrator]

Please add most recent results and ranges

Recommend you retest thyroid levels after 6-8 weeks on AIP diet

Strictly gluten free diet frequently essential

Test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

When lactose intolerant it’s common to need higher dose levothyroxine than typical

[Kapibara in reply to SlowDragon]

Thank you very much for the advice, my last results are from November TSH 1.710 mIU/l , fT4 22.00 pmol/l, aTPO 299. The results were done by my gynecologist, my endo tests blood only once a year /my next app is in June/. It is extremely difficult to find an endocrinologist here, they do not take new patients and areabsolutely overworked. I take biotin 300, can it worsen my condition? Especially the hair loss is horrible, no new hair is growing back, just shedding. I also take vit D 2000IU, vit C 1000, chelated magnesium 700 and B complex.

[SlowDragon Administrator in reply to Kapibara]

Biotin doesn’t worsen Hashimoto’s

Biotin does affect blood tests. So important to stop a week before ALL BLOOD TESTS as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Recommend getting FULL Thyroid And vitamin testing done privately

[SlowDragon Administrator in reply to Kapibara]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Or test privately

Low ferritin linked to hairloss

Vitamin D essential to test twice year

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[SlowDragon Administrator in reply to Kapibara]

We always need ranges on results (figures in brackets after each result)

High thyroid antibodies confirms autoimmune thyroid disease

Are you on strictly gluten free diet

[Lora7again]

Low Ferritin can cause hair loss do you know what your level is?

[Kapibara]

I am on AIP now and eat a lot of meat, I mean breakfast, lunch, dinner, all kinds and sometimes liver or seefish . I don´t eat any grains, milk products or sweets. Are ferritin levels iron levels? I took an iron supplement 100 mg 3 times a day for about a month and my GP told me that my anemia was solved by this. I can supplement iron, but with eating so much meat don´t know if that would be wise. I´ll have to organize a private test, thanks for the tips but I´m not from the UK. I was also thinking about buying LDN online as my endo didn´t have a clue and was totally even against the AIP diet.

[Lora7again in reply to Kapibara]

Ferritin is iron storage and it can cause extreme hair loss. I was told on a hair loss site that it needs to be at least 80 for hair growth. I have actually had two lots of extreme hair loss lasting about 2 years both times. Mine was caused by my thyroid levels either being too high or too low. At one point I was losing hundreds a day and I thought I would go bald but I didn't. My hair has now been growing back for over a year and I now lose only 3 hairs a day. I did have some hair extension put in to hide my thin hair and that did help me cope. You need to find out what the trigger is for your hair loss before it will start to grow back.

[Kapibara in reply to Lora7again]

Mine was probably triggered by not taking Euthyrox for 3 weeks while on a business trip abroad that turned out to be very stressful. That was almost one and a half years ago. It started suddenly and has been going on since. I tried many things natural or not, now I apply Alpicort F with estradiol and prednisol but it is even worse. As we all sit in lockdown now it is a blessing and a curse at the same time. I am a language teacher and now teach online but I fear the momento of showing again in front of my class with no hair. All unnecessary shops are closed, so that does not help. I am really happy that your hair grew back, gives me hope. My endo told me that the symptoms I describe apply for both hypo and hyperthyroidism, so basically he can not help. But they can fluctuate, can they not? How did your endo treat this?

[Lora7again in reply to Kapibara]

I don't have have a endo I walked out of his clinic nearly 10 years ago when he offered me counseling for feeling so ill. I think your levels might not be right for you for example when my TSH was 0.80 I felt ill and my hair was dropping out because my T4 and T3 were too low. Now my TSH is 0.38 and my T4 is higher I feel well and my hair isn't falling out. Just to add I am not taking anything at the moment because I am in remission from Graves'. You can read my story on my profile page if you are interested.