Not sure what to do next

[Ayia]

Hi, I am new to group. I have many symptoms in common with hypothyroidism but that are also similar to other conditions. I am 54, overweight, type 2 diabetic and menopausal. Pretty sure I have long Covid too. Strong family history of thyroid disease. My levels are T4 - 14 ( 10 - 22 ) TSH - 2.6. ( 0.5 - 4.5 ) T3 - 2.9. ( 3.1 - 6.8 ). I also tested mildly positive for TPO at 39 ( 9 - 24 ). I was iron deficient last year , cause unknown, took iron supplements and levels recovered though still at low end of normal range. GP took advice from endo but they say my levels don’t require treatment. Any advice appreciated

[humanbean]

T4 - 14 ( 10 - 22 ) 33% of the way through the range

TSH - 2.6. ( 0.5 - 4.5 ) 52% of the way through the range

T3 - 2.9. ( 3.1 - 6.8 ). Under range

TPO 39 ( 9 - 24 ).

Usually when the thyroid is just starting to fail, TSH will rise to be high in range or over the range, Free T4 will drop to quite low in range and Free T3 will be preferentially produced. Free T3 may even look quite good for a while. As a general rule of thumb it is the level of T3 which will determine how symptomatic someone is with hypothyroid symptoms, and yours is below range, so you must feel terrible.

As the thyroid continues to get worse TSH may rise to quite dramatic levels compared to the reference range, Free T4 and Free T3 will be under the range.

T4 is a storage hormone produced by the thyroid and T3 is the active hormone produced by both the thyroid, and by other organs by conversion of T4 to T3. TSH is produced by the pituitary, not the thyroid and it is the TSH level that the thyroid responds to.

So, your results are not showing a classic presentation of primary hypothyroidism (the most common kind of hypothyroidism).

Classic presentation of primary hypothyroidism would be :

TSH - High in range or over the range (Doctors would insist it must be over.)

Free T4 - Low in range or under the range

Free T3 - Low in range or under the range

There is another kind of hypothyroidism - Central Hypothyroidism - which may be either secondary or tertiary - and in that case the thyroid is fine but the pituitary is not capable of producing sufficient TSH to stimulate the thyroid. Your results look more like central hypothyroidism to me.

Classic presentation of central hypothyroidism would be :

TSH - Under range or in range or very slightly elevated.

Free T4 - Low in range or under the range

Free T3 - Low in range or under the range

Unfortunately, it is very difficult to get a diagnosis of central hypothyroidism because doctors have been taught that it is rare - and they therefore seem to assume they will never see it in practice. And a lot of doctors also believe that if the TSH is in range the patient can't have a thyroid problem. In your case you have an extra problem in getting diagnosed because your Free T4 is in range (but low in range) as well as your TSH. Labs will test the TSH, and if it is in range they will not bother testing the Free T4 and the Free T3. Since your TSH is roughly mid-range then doctors will assume your thyroid is fine. This is despite the fact that "normal" TSH for healthy people isn't as high as mid-range - see this thread for info on what TSH healthy people have :

healthunlocked.com/thyroidu...

For info on central hypothyroidism see these two links both discussing the same case report. The patient had the worst case of central hypothyroidism I've ever read about and I'm surprised she survived :

thyroidpatients.ca/2021/05/...

edm.bioscientifica.com/view...

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What you can do next ...

You need to ask your doctor for a referral to an endocrinologist. But not just any endocrinologist - most endocrinologists are diabetes specialists, they know little or nothing about the thyroid, and their treatment of thyroid disease is often useless and may even be sadistic.

Thyroid UK has a couple of lists of endocrinologists and doctors - one for NHS doctors and one for private (or possibly it is just one list, I'm not sure) - who have been helpful to somebody in the past and their name has been given by a patient to Thyroid UK. Unfortunately, just because a doctor has been helpful once doesn't mean they will be helpful and kind to everyone, so keep your expectations low.

You can ask for the lists of NHS and private doctors held by Thyroid UK by emailing :

[e-mail]

Please do your research on anyone you are interested in seeing.

1) Google any name you are interested in. You want to know what has been written about them, where they work, what their position is.

2) You can ask people on the forum if they have ever met Dr X and what he/she was like. Your post will be closed to replies and you must specify that ALL replies must be sent to you by private message via the Chat option. We can't discuss doctors by name on the open forum.

3) Search for them on the following websites to see what research they've done :

scholar.google.co.uk/schhp?...

pubmed.ncbi.nlm.nih.gov/

If the research they've done doesn't seem relevant to thyroid problems then strike them off your list. Anything thyroid-related is good. Anything related to central/secondary/tertiary hypothyroidism is particularly good.

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What you can do for yourself...

Many people with thyroid disease are gluten-intolerant or have coeliac disease. Giving up gluten completely is an essential experiment everyone with thyroid disease should do even if they think they have no problems with gluten, and they should try it for a minimum of 3 - 4 months. Many people on here have gone gluten-free and have been amazed at how much better they feel. There are some people who give it up, get no benefits, and go back to eating it, so it isn't necessarily a life sentence.

Hypothyroidism in any form will usually reduce the body's output of stomach acid. This leads to poor absorption of nutrients. Being deficient in nutrients is very, very common for us and it dramatically reduces how well we feel. So, the first thing you need to do is to find out your levels of :

Vitamin B12

Folate

Vitamin D

Ferritin (iron stores)

If Ferritin is low in range or under the range then getting an iron panel done is very helpful. Doctors will treat iron deficiency but once ferritin is back in range they usually stop and the patient's ferritin drops like a stone again. Iron supplements prescribed by doctors in the UK can be bought from pharmacies (with the permission of the pharmacist) without a prescription. If a pharmacist refuses to sell it, just go to a different pharmacy and ask again.

Personally, I test and treat my own iron and ferritin now without ever seeing a doctor about it. I've been low in iron all my life, and I now refuse to leave treating it to the tender mercies of a doctor. I supplement to get my iron/ferritin up to optimal, I don't want more than optimal because excess iron is dangerous.

If your doctor won't help with testing and treating your low or under range nutrient levels then unfortunately your only choice is to test and treat yourself. It can be done without a doctor being involved. If you want more info on this, just ask.

Some threads you might find of interest :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Good luck. Hope I haven't swamped you with too much information.

[pennyannie]

Hello Ayia and welcome to the forum :

Well I don't quite understand the term " mildly " positive, as you are either over range and positive or not.

Yes antibodies flutuate and have likely been higher and lower than when this blood test was run, , but this is a postive and over range result for TPO antibodies and likely that you have Hashimoto's auto immune thyroid disease.

Currently the guidelines suggest medication with thyroid hormone replacement should not be commenced until your TSH tips over 10 - it used to be 5 and some doctors prescribe on symptoms - but a TSH of over 3 is likely to be causing hypothyroid type symptoms.

Your TSH is currently not seen as an issue, and your T4 is 40% through th range, however your T3 is not even in range and too low, and it is too low a T3 that causes the sysmptoms of hypothyroidism just as too high a level of T3 may well cause symptoms of hyperthyroidism.

I understand with Hashimoto's that there can be an issue with poor gut function, with you being unable to fully absorb and utilise essential nutrients from your food, and it's suggested to get your ferritin, folate, B12 and vitami D levels tested as these all need to be maintained at optimal levels to support your core strength and well being.

There is no medication for Hashimoto's until such time as you get a diagnosis of hypothyroidism and then T4 - Levothyroxine, thyroid hormone is prescribed.

I presume your doctor referred to an endocrinologist because doctors work to everything having to be " in the range " and you have TPO antibodies over range and a T3 under range :

I think an explanation is needed as to what is the point of having ranges if numbers outside the range are to be ignored.

You deserve an explanation as to what over range TPO thyroid antibodies are and long term what does this mean for you and similarly you need an explanatio as to why it's seen acceptable to let your T3 fall below range and do nohing about it, and how low does it need to go before someone is to take any notice and deal with your disabling health issues.

The body runs on T3 and and under range T3 means you are not functioning with enough fuel, to run your body effectively to keep you well.

Thyroid UK the charity who support this forum hold a list of recommended endos, doctors and specialists who do have a greater understanding of thyroid disorders should you wish to reselet a second opinion with someline likely to be more supportive.

Thyroid UK also have, in much greater detail, all issues relating to thyroid health conditions and the back up services we all tend to rely on to access better thyroid health.

[Ayia in reply to pennyannie]

Hi thanks for your reply. I too fully believe that if a result is outside the range it should be dealt with accordingly or what is the point? It was actually the endocrinologist who used the term ‘mild’. My T 3 result was from just over a year ago and at the time was marked as being borderline. My TPO has been above range for about 10 years and the assumption is that as my TSH has not changed much in that time than there is no need for anything else but keep getting annual checks. My TSH has fluctuated upto 3.4 before now but never any higher.

Apparently in the US they will treat symptomatic hypothyroidism on a TSH result of 2.5 and above but in UK this has been debated but ultimately decided against? In part due to the amount of ‘new’ patients they would have if they were to potentially treat based on such a low TSH range!

I will discuss with GP again and look at Thyroid UK info as suggested. Thanks

[pennyannie in reply to Ayia]

Well yes, as guessing we are all " just waiting and wishing " for the" free precriptions " that comes with a diagnosis of hypothyroidism.

I think a recommended specialist from the Thyroid UK list might be your best option or ask the forum members for feedback on any suitable specialist you may find yourself looking at, before commiting to paying moneyand lip service for the usual dogma.

P.S. Asking for feedback from forum members has to be by Private Message ( PM ) but the facility is here, on the screen, so no worries.