Having been unwell since being diagnosed with hypothyroidism in Jan 07, being so ignorant of the problem. I truly believed that all I needed to do was take my Levothyroxine n that was it, I was cured. Since then I've suffered with so many infections, arthritis & degenerative discs in my spine, fatigue like you wouldn't believe. I've had 18 hospital stays due to illness since then with all sorts Inc meningitis x 3.
Finally after having my last bout of meningitis I've started to research thyroid n hashimoto's and am having 2 months off work (unpaid )to concentrate on getting myself well with gluten free diet as well cutting out additives, perservities & flavourings.
For the last 9 months I've felt horrendous n my blood test results have been up n down like a yo yo, my GP has no idea regarding thyroid problems n just orders another blood test n we never ever get anywhere. In November I had shingles in my mouth which then became infected n it took 4 weeks to recover. I've just had viral meningitis and finally put my foot down n demanded more tests etc.
I suffer with every symptom, weight gain, tiredness but unable to sleep unless it's 4 am to 10 am which obviously isn't plausible, dry skin , hair loss , facial hair, constipation, uti, headache, hearing loss, fast heart rate, anxiety, thristy ness, dizziness, pins & needles, brain fog, numb hands, blurred vision, dry eyes, heavy periods, low blood pressure n fainting, nightmares n so on. I'm also ill a lot.
anyway a phone call to the surgery today n some of my results are back - my tsh is 28, my t4 is 26 n my antibodies are 285.
I'm trying to research so that I go to my GP with a plan of action (I've an appt in the morning ) I'm going round n round in circles. So basically I'm asking for some help from you guys, you all seem so informed. What would you be asking / expecting from your GP?
TIA.
Written by
LornaP
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Lorna, It's possible your high TSH and FT4 may be related to the drugs you have been prescribed to treat your shingles and viral meningitis. If your GP rules out drug interaction interfering with Levothyroxine s/he should refer you to an endocrinologist. High TSH and high FT4 is unusual and indicates resistance to thyroid hormone or TSHoma, a form of central hyperthyroidism caused by a pituitary adenoma.
It's dreadful..terrible..i wish i could feel well enough to live a normal life. It is amazing anyone can function normally at all. I don't know what i am going to do next.
Lorna, no wonder you are unwell with a TSH of 28 and on treatment!
First thing I would do is ask for a Full Thyroid Function Test i.e. TSH, T4. T3. Free T4 and Free T3 a. Also request a Vitamin B12, Vit D, iron, ferritin and folate. If you've had these recently post them with the ranges (labs differ throughout the country and it makes it easier to comment.
I think since 8 years have now elapsed since your first diagnosis and TSH is still very high, you are right to take your health into your own hands. Your GP may be reluctant to do all the Full Thyroid Function Test but what he wont do you may have to do them yourself. T3 and Free T3 are very important as it's that hormone which we need to function at if we have very little or don't convert T4 (levo) into sufficient we cannot get well.
What dose of thyroid meds are you taking at present? Supplements, if any, ? I think you've been on too low a dose of levo for long enough as you are unwell, so now ask your GP for the addition of T3 on top of levo as it must be too low a dose of levo for you to have such a high T4. It should be around 1. When you have a new blood test do not take levo before it, take it afterwards and have the test as early as possible, take levo after.
If you take supplements/other medications leave 4 hours between levo and supplements so that nothing interferes with the uptake of levo.
I think you still have a long way to go, but you might now arrive more quickly by taking things into your own hands. With the following link it refers to being on too low a dose with the result that we become more unwell. You can print-out the whole text for your GP. T3/T4 is better than T4 only. Also email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft highlight question 6 in particular and how low TSH should be.
It will be interesting to know what your GP says about your results, as Clutter, I think, may have hit it spot on.
Thanks ladies, I'm truly bamboozled by it all. I'm currently on 225mcg Levothyroxine a day n take it an hour before eating/drinking anything other than water. The first week of January my tsh was 89 n a week later it was down to 9. All my GP's do is order more blood test a week later etc. It's not that they're not willing just don't have a clue. My last iron count was 5 n there was talk of a blood transfusion but then I was in hospital with the meningitis. They found through iron medication my levels had Rose significantly. The only medication I had was oramorph n paracetamol due to it being viral but obviously I was rather unwell n my body was stressed n I wondered if this was why my tsh levels had gone up. Thank you ladies. I'm making a note of everything x
Lorna, FT3 usually drops when you have a serious illness, recovering from an op etc. as a protective measure to slow down the body and enable recovery. This causes TSH to rise but I doubt as much as 89 when on 225mcg. I would have expected FT4 to drop too. If your FT3 is also high I do think it may be RTH or THSoma.
Clutter and Shaws have already given good advice re. thyroid and further tests, including B12 deficiency and Vitamin D. I was struck by how many symptoms of B12 deficiency you have, Numbness and tingling, especially, could be early neurological symptoms, which can have serious consequences if not treated urgently.
Autoimmune thyroid problems, B12 and D deficiencies are usually interlinked (my sister has severe B12 def. & we both have autoimmune thyroid disease - daughter also and regularly suffers from shingles) and they impact on all the systems of the body, especially the thyroid - it is more than possible that B12 & D could help your thyroid.
Doctors are generally not up to date with the latest research guidelines on diagnosis and treatment for B12 deficiency and you have to be prepared to research and fight your corner or self treat, as will see from these links that the serum B12 tests are flawed and unreliable, so you should therefore be treated on symptoms, which you have. These are some helpful sites:
It might be also be worth just pointing out to GP the summary points of the latest BMJ research document - Cmim BMJ- A.A. Hunt B12 :
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Good luck with your appointment and very best wishes for a return to health
Finally I feel that I'm getting somewhere, I don't know wether to laugh or cry. After 8 years of ignorance n battles I've been referred to an endocrologist.
My results have gone back with parathyroid issues also - does anyone know anything about this condition at all? Although my b 12 & vitd are within range.
My tsh results were actually 0.08 with the range 0.05-5.8, my t4 was 26 with range 11-25. They were the only results I was able to get. I'm being tested tomo for serum cortisol, free t4 & free t3. My GP was the best she's been, she agreed that maybe I should be prescribed t3 but didn't want to with being referred , she wants them to see me as I am.
Thank you for all your advice n please keep it coming xx
So these are now your current labs? I really believ you need to get off of most of or all of the levo and add t3..you appear to have Hashimotos, just by the way that your labs are yo yo ing!! Please realize that most people on here are not getting better because of their doctors don't know what they are doing. Also realize that labs are just not very useful when it comes to dosing your meds properly and not at all, in a thyroid hormone resistance issue, like it appears that you have. It would be very rare to find a doctor, who will not keep you ill.
With Thyroid results like that and that much medicine and your symptoms, i think that you are not converting your t4 to active t3. The pill that you take is t4 only..the body has to convert that to t3, which is the active hormone. When you don't convert well, you don't get any symptom relief from your meds. Also, as high as the TSH is, it looks as tho this is some form of Thyroid Hormone Resistance..your TSH is not coming down in response to all those meds. Your illness could effect the labs, but you are ill do to Hypothyroidism..i am sure of that. Please contact Shaws about all her links to info on Dr. Lowe and his treatment, questions and answers, for those remaining ill and how to treat , when t4 meds like levo, don't work, why they don't work etc... I wish i felt well enough to answer you in more detail!!!
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