Feeling frustrated, hashi but not yet hypo so endo won't do anything :(

Been to see my endo today (I am a type 1 diabetic so get regular appointments for my insulin pump) and I had had a subclinical TSH of 5.35 in April. I have been falling dreadful, totally exhausted, lots of pain in calves when walking making walking painful, carpal tunnel, skin spotty and itchy, and I just feel terrible. He did tpo antibodies and today they have come back >1000 so he has said I do have hashimotos buy that my TSH was now 'normal' (kicking myself for not asking for number) so he said the symptoms are probably due to that but can't do anything until TSH rises more. I have an appointment in 6 months and a retest but I'm not sure at the moment if I can cope like this for another 6 months or more, I am only 29 and I feel awful. I don't know where to go from here?

14 Replies

  • They put me on meds at 5.5. You need meds. If you have antibodies and symtoms you need to be on a bit of treatment. Ask for an Endocrinology appointment if he will not prescribe you anything which I think is ridiculous if you are symtomatic....Drs! Also ask for a second opinion but yes you needs some meds....print out some stuff from various sites regarding TSH as this Dr is on one why he not prescribing when your TSH is well high enough. In USA they treat at 3.0.......and if you are symtomatic in uk they need to treat you at 5.3 esp when have antibodies quite high. Goodluck and keep in touch.

    Oh yeah if you have Hashis your TSH goes up and down quite alot so its hard to tell just by TSH as varies. I think.

  • I don't know how you can cope either, with all of those symptoms. You have to change your Endo and/or doctor too.

    Dr Toft of the British Thyroid Association says that if you have antibodies:- Excerpt

    2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?

    The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.

    But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

    In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

    Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.


    PS. The fact that in the USA you are now medicated with a TSH of 3 - the UK seem so out-of-date by insisting on a TSH of 10 before treatment.

    What an uphill struggle to get medication. If you email louise.warvill@thyroiduk.og she has a list of sympathetic doctors - some NHS Endos/private doctors.

    Some of our members have found the following book very helpful, as the pharmacist herself has hashimotos.


  • This is another link from Dr Lowe re diabetes which may be helpful. Dr L died after an accident in 2012 and Dr Skinner (another great thyroid doctor and hounded by the GMC) died of a heart attack last year.



  • It was an endocrinologist I saw, and the only other local one won't see me because I have an insulin pump and he doesn't want to deal with that (so he is even worse than my current endo!) and actually he has been really good with getting my diabetes sorted and I like him for that. But he had said in April that of TSH was still over 5 he would have treated and not waited until 10 but because it has now gone down a bit (not sure to what) he won't treat, and my GP doesn't want to touch it as I have an endo!

  • Jody, contact your endo's office and ask the secretary to email or mail your April results with the lab ref ranges. I'm very surprised your endo declined to start you on Levothyroxine as this can delay the progression of Hashi's.

  • Maybe he believes Jody's clinical symptoms are nothing to do with Hashi's. Little does he know if he thinks this.

  • Another member's endo started her on Levo with low TSH because she had Hashi's. Said there was no point in waiting for it to get worse. Mind you he overmedicated her so she went hyper :o

  • Sorry Clutter, I pressed wrong button again (Edit instead of Reply).

    I think the majority of the Endocrinology Depts needs an overhaul to re-learn all about the importance of the Thyroid Gland and stop playing God and ruining people's/families lives. Where is the 'compassion and care'. Maybe they should take the Hippocratic Oath again.

  • I'm doing that all the time. I think its about time and some that thyroid care is improved. It makes me equally angry and sad that people are expected to live with debilitating symptoms until their TSH is so high they qualify for treatment.

  • How much damage can be done by then, i.e heart for example, cancer and/or diabetes. Broken families, we could go on and on.

  • He said that he did think all my symptoms were to do with my thyroid but then just said there was nothing that could be done yet! My diabetes control has been steadily improving so is pretty good now and he didn't think the symptoms were related to my diabetes. My diabetes nurse was trying to say why can't anything be done as clearly being in agony when I walk and falling asleep as soon as I get home from work are not normal and no fun but he just kept saying it could take a couple of years to go hypo and there was nothing to be done until then. He really is better than the other endo who I used to see and I am quite meek when it comes to getting demanding with doctors and scared of looking like a hypochondriac!

  • Jody, your endo may be a good diabetes man but he isn't a good thyroid doctor else he would have treated you because of your clinical symptoms. It's not true that he has to wait until your TSH is >5 when you have Hashi's. When you have your next thyroid test have it done very early in the morning when TSH is highest. This should tip you over the magic 5.

  • a TSH of 5.35 and very high Hashimotos antibodies IS NOT NORMAL

    you need treatment

  • Hi Jodysd6, While you're waiting for treatment do the best you can with your lifestyle, diet, attitude etc. (This is advise to myself too, and this is what I'm trying to do). I'm getting private health at the moment in a different country so I know I'm lucky. I took my results from one endocrinologist there to another endocrinologist there and from looking at the results and him doing an ultrasound immediately on my thyroid, which showed a small gland with damage due to Hashimoto's he put me onto 25mcg Levothyroxine when my TSH was slightly over the range 5.3 (range 0.27-4.20), FT4 was slightly under the range and FT3 was very low in the range. After 6 months I went up to 50mcg. My latest results are TSH 2.37 (0.27-4.2), FT3 3.33 (2.8 – 7.1), FT4 16.00 (12.0-22.0). So the TSH is just about ok but my FT3 & FT4 are not in the optimal range. I should probably go up to 75mcg, but I didn't argue about that because I would really like to come off them and with God's help and guidance put my Hashimoto's disease in remission. If possible ask your doctor to test if you are celiac, intolerant/sensitive to gluten, levels of B 12, Ferritin, iron, Vit D3, magnesium, selenium, zinc and iodine. An ultrasound of the thyroid would be very useful too. I don't really notice any difference being on the Levothyroxine (possibly because it's too low a dose) but feel better from supplementing on the B.Vits especially (which help the adrenals and loads of other stuff), I also need to supplement iron (for ferritin) and Vit. D3. I did have the tests for those though so knew I needed to supplement. My main message is: go back and ask for other tests which if you're deficient can also give you symptoms similar to hypothyroidism and if you work on improving any deficiencies, especially the B. vitamins that will prepare you for taking Levothyroxine. My theory (which, unfortunately I don't have experience of yet) is that a bad situation (not getting the Levothyroxine yet) might, possibly be a good situation because it gives you an opportunity to make some changes to your TSH, FT4 & FT3 before becoming dependent on Levothyroxine. Sometimes I wish I hadn't started taking Levothyroxine as I've heard that once your thyroid is used to getting Thyroid hormones it stops trying to make its own. I'm still learning and so are the experts. PS I've heard that liquorice although good for the adrenals might not be good for Hashimoto's. Best of luck :)

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