Do I need to see a specialist in Hashimoto's?

Just had a follow up with my Endo (off the recommended list) and he has told me that despite my symptoms there is nothing to treat. Also said that if my blood tests had been done privately at his place of work the upper range for TSH would have been 4.5 and treatment would have been considered but as I had them done on the NHS the upper range at that hospital was 5.5 and I was well under that!

When I asked about Hashimoto's and T3/T4 he said there was no evidence to suggest treatment would help and organisations such as Thyroid UK were giving advice based on very limited medical evidence. Strange thing is I have been taking 50mg a day of my father's Levothyroxine for the last week and most of my symptoms, with the exception of head pressure and brain fog, have greatly improved.

His advice is to stop taking Levothyroxine, get tested for TSH in 4 weeks and see him again in 5 weeks time. I am currently signed off work and he has suggested extending this until my next appointment. What do I do now? Is there a particular specialist I should see?

Last blood test results:

TSH 4.4 0.50 - 5.00

TPO Antibody 228 0.00 - 6.00

Serum testosterone 12.7 8.30 - 30.20

Serum SHBG 30 14.00 - 71.00

Serum prolactin 106 73.00 - 407.00

Serum LH 1.3 0.60 - 12.10

Serum FSH 1.7 1.0 - 12.00

Serum cortisol (9am) 285 101 - 536

Total vitamin D 98.2 >49.90 .

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9 Replies

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  • Porcelt,

    There are no specialists in Hashimoto's in the UK. There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    Was the blood test taken before you started self medicating Levothyroxine? TSH 4.4 is close to top of the range and indicates your thyroid is struggling hard to produce thyroid hormone although it is likely your FT4 and FT3, if tested, would be in range.

  • Hi Clutter,

    Yes the blood test was taken before I started self medicating.

    I have an appointment with my GP on Friday so was going to ask him if I could go legit and trial levothyroxine for 6 weeks or maybe try NDT and see if that helps with the brain fog and weight gain. Would that be a typical approach?

  • If he is being insensitive to your high TSH what about the TPO antibodies? Maybe you don't have a thyroid problem but you DO HAVE an autoimmune problem. You cortisol should be higher in the a.m. but your vitamin D is fair. You could start taking selenium as it may help with your autoimmune attack.

    The determination of TPO antibody levels is the most sensitive test for detecting autoimmune thyroid disease (eg, Hashimoto thyroiditis, idiopathic myxedema, and Graves disease) and detectable concentrations of anti-TPO antibodies are observed in most patients with these disorders. The highest TPO antibody levels are observed in patients suffering from Hashimoto thyroiditis. In this disease, the prevalence of TPO antibodies is about 90% of cases, confirming the autoimmune origin of the disease. These autoantibodies also frequently occur (60%–80%) in the course of Graves disease.

  • Hi Heloise,

    He said the high antibody level indicated an autoimmune issue but as TSH was 'normal' the 'soft symptoms' I experience could have a host of possible causes. Strange thing is he is supposed to be a thyroid specialist but had no interest in discussing my thyroid and was mainly interested in my non-existing libido! And when I asked him about the constant headache and feeling of pressure in my head he first of all said take a paracetamol and then suggested I have a CT scan done.

    What can I do to raise Cortisol? And should I be looking to purchase NDT rather than trialling levo?

  • You are up against such obstinence, porcelt, it really is upsetting. I'm an old hand at this, I would give him a piece of my mind and go ahead with my own good sense. You have a diagnosis and you have supporting symptoms. What more does he want????? You adrenals and thyroid interact so supporting your thyroid may work things out. Don't take painkillers, not even aspirin if you want to know the truth and don't have a CT scan unless they persist after you have worked on the thyroid issue. I prefer NDT over Levo but whatever you can get is fine. Keep asking questions as you go along and get advice.

  • Also get the impression that some of these private endos who also have an NHS day job see being obstinate as an easy way to make money from people desperate to be listened to and rather than treat their symptoms there and then they just get you to make more appointments until they finally decide to treat you.

  • So many motives.....and they are all bad. I've been here for four years and have read thousands of posts so I know what a problem it is under the NHS. I'm in the U.S. and the treatment is hardly any better but if you insist, you can usually get a prescription. It took me six years to get NDT after Synthroid. But that was a big Pharma problem. I know it's more of an expense problem with the NHS. It's cheaper for you to purchase some of these hormones than it is for the NHS to purchase (from what I read here). If you can keep with the 50 mcgs. and then get a test in June, your TSH will probably go down somewhat, then you can get an idea how well it is going to work. You may end up on 100 or 125 depending. If you go to Izabella Wentz's site, her ideas are the most advanced look at autoimmune disease and you can begin a plan of your own. Some are even using stem cells to restore their own thyroid. In your case you have to stop the attack first. Look into causes of TPO antibodies. This is also a good site.

    stopthethyroidmadness.com

  • I should add that you can support your adrenals with magnesium and vitamin C. Do not deprive yourself of salt.

    I have never tried this for a headache but someone suggested putting your arms in very hot water. This may divert blood away from the head ache.

  • This is typical of endos. Yes, there is something to treat! You could look for an "alternative" doc who understands what restorative/functional/environmental medicine are about, and the gut-autoimmunity link. Or you could try plowing thru one of the books by Izabella Wentz.

    As far as libido, many docs do not understand that libido is dependent on proper function of the HPA axis and thyroid, so they goto testosterone without looking at the more basic stuff. Once I got rid of gluten, got nutrient levels up, got thyroid fixed, and fixed my residual insomnia with amino acids, libido has come back without having to use testosterone or other expensive higher-order hormones.

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