Hello, I am new here and this is my first post. I had my blood tested at the end of October as I have been suffering from hair loss, night sweats, the shakes, I'm always very cold, tingling in my fingers, shortness of breath and an increase in migraines. Initially I thought I was just struggling to get over the two operations I had had this year due to endometriosis plus having to live with that everyday makes you feel like crap so I tend to just shut up and get on with things. If it hadn't been for the migraines becoming a problem I'm not sure I would have gone to the doctors if I'm honest. However I did and the first thing she asked me was if anyone in my family had a problem with their Thyroid. My mother has an under active Thyroid and my aunty had cancer of the Thyroid.

Anyway, I had my blood taken and it came back as follows: TSH; 9.4 (up to 6.9) T4; 15 (up to 21)

Because of the results they are unwilling to treat me at the moment, the first doctor I saw was very rude and suggested I might like to try some antidepressants! I responded by smiling politely and leaving as I knew if I responded in the manner I wanted too I would only be re-enforcing his opinion of me. Before i did leave however he did say I could be re tested in 3 months time.

A week or so later I got an appointment with the doctor who actually sent me for the blood test and she says that she is in no doubt that I am suffering from an under active Thyroid but she is unable to help me until I get worse.

I'm so confused, help?!

10 Replies

  • This sounds very weird to me. No wonder you are puzzled.

    The guidelines say we aren't to be medicated until TSH reaches 10 but with clinical symptoms (humane) doctors usually prescribe if you reach 5.

    I think you will have to look around for a good doctor. The present ones are incapable and you will only get worse. The fact that you have family who already have thyroid gland problems, they should have taken that into consideration.

    In the USA, at least they appear more civilised, in that most will treat you when your TSH is around 3.

    From now on always ask for a print-out of your blood tests, for your own records, and so that you can post here if you have a query, make sure the ranges are stated as labs differ and it makes it easier to comment.

    If doctor hasn't already tested your Vitamin B12, Vit D, iron, ferritin and folate ask for these to be done.

    Isn't it strange - you have clinical symptoms and a TSH so near the top point. Symptoms which make you feel very unwell. Yet are offered antidepressants for which there is no blood test? Weird.

    We have to read and learn in order to recover or vastly improve our health. I think your first is to find doctors who are educated in thyroid hormones dysfunctions.

  • Good luck Newbi I too am in a similar place but not anywhere near a high TSH as yours and if you aren't getting help with that level goodness knows what is happening with medical profession.

    The lovely people here are full of wonderful information and knowledge and a good sense of humour to boot. I hope you get help soon.

  • Welcome to the forum, Tor666.

    Sometimes an elevated TSH can be due to non-thyroidal illness or a virus which is why protocol suggests retesting and treatment doesn't always commence on the first test. Your symptoms do suggest hypothyroidism. When you have the repeat blood test try to have it early in the morning when TSH is highest. Try to book in with the more sympathetic doctor too. The first wasn't at all helpful.

    Tingling in fingers and migraines can be a sign of B12 deficiency so it is worth asking your doctor to test B12, folate, ferritin and vitamin D. All can be low/deficient in the months preceding a hypothyroid diagnosis.

  • Thank you so much for your replies, the second doctor I saw did say she would be happy for me to be re tested in 2 months rather than me having to wait 3 but that's all she could do.

    My Thyroid had been tested 12 months previously to the one taken in October and at that point my TSH was at 2.6, you would think that would be enough to tell them something is wrong.

  • have a read of the responses to my questions on my page- very similar to you except TSH not as high and T4 lower

  • That would be the reason that they want another blood test in 2 months. Sometimes it's a one time thing and the thyroid correct itself. So I would suggest to wait 2 months, get another blood test (early as possible) and see. If the TSH is still that high than find a docter who is willing to give you medication (if they are hesitating, suggest a trial).

  • Subclinical hypothyroidism they say should not be treated until the TSH reaches 10, BUT this isn't subclinical as you have many symptoms of hypothyroidism. It's unusual for the TSH range to be up to 6.9 as most are to 5.5 and this is far too high for patients.

    Is there any chance you could see another GP or ask for a referral to a Thyroid UK listed Endocrinologist?

  • Hi Tor,

    Definitely get your B12, ferritin, D, iron and folate tested as tingling in the extremities and shortness of breath are symptoms of low B12., made worse by low ferritin. Migraines can be made worse by low magnesium - we are all depleted in magnesium and with your obvious underactive thyroid you will have absorption problems causing generally low mineral levels.

    What I have found is that if you get your minerals and the bvits to optimal levels then your body can cope better with an elevated tsh - not ideal but you can do something about this without a prescription.

    Best form of magnesium I have found is chelated (Drs Best), I have found Ionic minerals very good for getting the right balance of minerals in a well absorbed form and they have made a big differenced to how I feel. B12 in lozenges is best - Jarrow is a good make. We are generally all very low in D3 due to lack of sun so supplementation would help you too. I fond basic ferrous fumarate ok, but it doesn't agree with everyone.

    Hope this helps.


  • I hope they run an antibodies test for may have an autoimmune disease. In the UK, TSH needs to be around 10 for treatment...that is horrible!!

  • Your family history and unusual blood test results could be indicative of thyroid hormone resistance. It is genetic but even in the same family, everyone does not always display the same symptoms.

    The condition runs in my family. Most of my siblings need a lot of sleep but have had reasonable health most of their lives. Now in their fifties the symptoms are becoming more severe. My son had severe symptoms from an early age and it was through him that I discovered the condition. I also have 2 first cousins with similar conditions.

    The person who researched the treatment was Dr John Lowe, who had the condition himself and came up with the treatment with very high doses of T3. Unfortunately he died last year and there is a dispute over the ownership of his website and books so they are not available. Much of his info is available on other websites, including Thyroid UK.

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