I have been seeing a endo now for over a year and Im still no further forward at all. I don’t like to complain about doctors but he seems to constantly take blood results repeatedly but is never actually explaining what is going on. My latest test was back in August 2017 and only now just heard from him. He has wrote to me saying he will assess me in 6 months time to see how I’m getting on baring in mind my symptoms are getting more servere and he knows this. Im really suffering with the symptoms. Am I crazy here or should he be seeing me sooner than this? I haven’t seen him since August and now he plans on seeing me in 6 month which will be July and that’s nearly 1 year. It’s not as if my results have stayed the same either because my FT4 has went from being in the 19’s now to being 13.6 and my TSH is up and down like a yo-yo. My gp has now done his own thyroid tests due to how long the endo is taking but he can’t actually give me any medication (if needed) because of my age, it has to be done by a endo (I’m 24). I’m at the doctors tomorrow evening to get my results. My question is should I be asking my gp if I can see a different endo or wait another 6 months to see my usual one?
Thank you in advance
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Ashley124
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Your gp can prescribe. However, your case looks complex and so an endo would be better. Your high TSH with highish fT3, fT4 is unusual. There is a small chance your have a genetic condition called Generalised Resistance to Thyroid Hormone (GRTH). This is only investigated at Addenbrooke's Hospital in Cambridge. In view of your unusual symptoms and blood test results I would contact your endo now and state you would like to be referred. to Prof Chatterjee at Addenbrooke's to check for hormone resistance. A referral to Addenbrooke's has to come from an endo. Even if you don't have GRTH you will get to see a different endo who may be more clued up.
(It's possible you have GRTH and your thyroid has been producing the extra hormone you need but now you have autoimmune condition you thyroid can't cope and a goitre is affecting your ability to swallow. Be polite but strongly assertive if you contact the endo, make sure they at least take some positive action, preferably the referral.
This is the autoimmune disease where our own antibodies attack the healthy tissue of our Thyroid gland causing it to function less ie Underactive Thyroid / Hypothyroidism.
So when we have a cold or other infection, as our antibodies increase to fight off the 'invaders' / infection, our Thyroid comes under more severe attack.
With Hashimoto's, Thyroid Function blood tests can fluctuate.
Did your Endo (or GP) do any other tests? Have you had any tests to check your Adrenal function? Have you had any scans.
My GP sent me for an Ultrasound scan of my Thyroid. Then I was referred to Endo. Endo arranged a Short Synacthen Test to check my adrenals first before starting the Levothyroxine.
You haven't said what your symptoms actually are - but you could ask your GP to do blood tests to check the following nutrients levels also because you may have some deficiencies that require presrcribed supplements :
Vitamin D, Calcium;
B12, Folate and
Ferritin.
You could Google search " symptoms of deficiencies in * - NHS choices" and on other sites for each nutrient.
I find it helps to make lists to take to GP and hospital appointments - one of my symptoms and one list of questions / requests.
I hope you are successful in getting a referal to the Specialist mentioned above by jimh. I have Hashimoto's and Hypothyroidism and am on Levothyroxine. I don't have any experience or knowledge of GRTH.
All the best in getting a full diagnosis and the treatment you need.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12.
Always get actual results and ranges.
Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ask GP for coeliac blood test first
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
Don't understand GP extraordinary statement that he can't treat you due to you being 24 !!
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne:
tukadmin@thyroiduk.org
Plus ask for the list of recommended thyroid specialists.
Just seen these replies now thanks so much for them. My symptoms are:
- Exhaustion
- Nausea
- Memory Problems
- Feeling hungry all the time (although I’ve lost so much weight I’ve went from a size 8 to a size 4)
- Sore Throat and always feeling like there’s a lump in there
- Aches and Pains
Just generally feeling rubbish everyday now. I’m starting to get new symptoms like Dizziness and Rib Pain. Not sure if these are related though.
I’m also having anxiety problems but not sure if this is down to my mental health or the thyroid as i’ve recently been diagnosed with OCD.
I got some results back today and my tsh has now went up to 16.52 (0.4-4.0) and my fT4 is 17.4 (10.0-25.0). My vitamin D is fine but that is probably due to the sunbeds.
My doctor is now getting in touch with endo because he wants to know why he’s dragging his heels with treatment.
Thanks for the Gluten Free diet advice. My mam is coeliac so will be able to help me with that.
I must say I asked him if I had hashimotos and he said he doesn’t know if I have or not (he had the antibody tests by this time aswell).
I sometimes feel like he doesn’t know much, I mean I don’t know that much about the thyroid myself but I feel like sometimes I know more than what he does. I love this forum because you all know what you are talking about. I get more answers from here than I do my own endo. Thanks so much for all your replies. Hoping for a diagnosis soon.
And no I haven’t had any adrenal tests or had any scans. I am going to do my research for next time I see him because it doesn’t make much sense to me but I’m getting more educated on the thyroid since being on this forum. Recently bought a book on the thyroid so I can understand it more.
Suggest you find another endo. This one absolutely clueless
TSH should be around one and FT4 towards top of range and FT3 at least half way in range
You are severely under medicated
Highly likely coeliac or non coeliac gluten sensitivity. This is as severe a disease as coeliac, but no test
Insist on testing of vitamin D, folate, ferritin and B12 plus coeliac test
How much Levothyroxine are you on?
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Hello just seen your reply now. Thanks. I am not on any medication at all it’s been a year and half now trying to fight to get put on medication and get a proper diagnosis but constant blood tests are getting taking by him and not much else. My doctor has got in touch with the endo to clarify exactly why he is not treating me with a tsh of 16 and I don’t have an appointment until the end of April but that appointment is only so he can assess me on how I’m getting on. I feel like I can’t go on much longer with how severe these symptoms are getting. My symptoms are:
-Constant nausea
-Tired all the time
-Swelling to the the face in a morning
-Aches and Pains
-Sore Throat
-Dizziness
-Dramatic Weight Loss
He seems to think because I’m not putting on weight that I’m okay. I’m still losing weight now and can’t really afford to lose much more. I’ve tried everything to put it back on and nothing works.
Do these sound like symptoms to do with the thyroid? And am I crazy in thinking I should of been diagnosed by now?
Also referring to the tests, I’ve only had my vitamin D checked but that’s fine. I go on the sunbeds now and again so I think that’s why it’s normal. I will be asking about the other tests. Thank you.
Weight loss is a relatively common side affect of Hashimoto's
Gluten intolerance is extremely common. Very similar to coeliac. Most coeliac's lose weight due to inability to absorb nutrients. Same is often true with Hashimoto's
If your TSH is 16 you need treatment. See a different endo
If you Are you in UK email Thyroid UK for list of recommended thyroid specialists
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