Last year was quite possibly the worst year of my life. Eventually after months of going back and forth to the GP I was referred to an Endo who diagnosed sub clinical hypothyroidism and prescribed 75microgrames levothyroxine and then promptly washed his hands of me and discharged me back to my GP. The Levo helps - at least now I can actually get out of bed 99% of the time (before 'diagnosis' I could bearly get from my bed to the bedroom door on most days!) but I still don't feel well. I have sleep disturbance. My body aches most of the time. I am 42 but walk like a 90 year old. I am constantly cold. I have major difficulty concentrating and suffer 'brain fog' to the extent that it affects my work. I suffer stomach 'issues'. And suffer from low moods.
My GP only tests tsh and refuses to up my dosage as my results are now "in the normal range".
I need help. I can not go on like this. Are there other tests I should be asking for? Could this be cfs - a friend suggested I seem to exhibit symptoms of this condition. What can I do to help myself? Are there any over the counter supplements I could try? Finally is there a specialist in the South Wales area (private or nhs) that anyone can recommend?
Any and all assistance would be gratefully received.
Written by
welshguy
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From reading others posts, it would seem that your endo has been irresponsible in putting you on what looks like a starter dose, and then washing his hands of you, discharging you back to the GP. I hate those words....... within normal range
As for the walk like a 90 year old, well I hear you loud and clear, and raise you one sarky git that sits on the corner singing extremely badly..... there she goes justa walkin down the street, snapping her fingers and a shuffling her feet!!!!
I too feel like a 90 year old, most days his lordship has to help me out of bed I am that bad, and despite a TSH of 3.89 was refused treatment by the so called top endo, despite another consultant sending me as my other thyroid hormones were too low, stating I needed treatment. His words were, that he would never treat me until my TSH got to 10!! I feel I would be dead at this point!!!
I went to my GP for him to get me a second opinion, for him to review the last lot of bloods, thensay that everything was 'within normal limits' and did not warrant a second opinion, and then said that he feels it is CFS, so I am seeing a consultant in this speciality at some point in the near future!!
BUT!!
I got a call from my doc's surgery on Tuesday, asking me to go in for more bloods, as they have been reviewed and need repeating as some of the results needed checking.
go back to the doc, see if you can get a referral to a CFS specialist, as they can also adjust your levo if they feel it is that other than CFS.
Good luck
Ann xx
Croeso (is that right?)
Doing a little homework - have you been on 75 since August? Have they tested bloods? - If you've got your recent results, please post them so folks can chip in to help with a bit more info. Dare I say you'd usually be on a bit more by now? (I'm sub-clinical too - but as 'within range'=no meds so CFS suggested instead). The classic symptom of being cold alone indicates you are still low thyroid.
Stomach issues are very popular here, you may not be able to absorb meds or nutrients properly. Ask your GP for tests for Vitamin D, irons, ferritin, folate and B12 for starters - all tend to be low with low thyroid. From my own experience with joint/muscle pain I found Vit D3 drops really helped (I'm no doc btw just a fellow sufferer)
What is wrong with GP's?? i find it scary that your gp is testing TSH alone...you need a FT4 and if you can wangle one... a FT3. This will give a much fuller picture of whts happening.(If youve had them post them up with the ranges for folks to comment on).
Read 'stop the thyroid madness's website page about TSH...you can make up your mind whether your gp is testing you adequately or not. Around where i work...most GP's do this....and it makes me want to cry. And id be wary of the word 'normal'. They havent a clue whats normal for you...most of us would not have had a thyroid test prior to getting sick to give the docs a benchline to work from. Your results arent normal for YOU as you are feeling so poorly. CFS is a diagnosis that was given to me as all my results were 'normal'. I have hotly disputed this and refused to accept it until all other avenues are explored and discounted. It feels like a 'im not sure whats wrong with you because your bloods are normal but i have to label you with something' kind of diagnosis. The same happens with fibromyalgia and other conditions. I think if doctors and endos were a lot more open minded and trusting of their patients and stop being 'paper-practitioners'...these conditions would be affecting fewer people, because they would be being treated optimally. Although these conditions do exist... They are spurious...they dont know why or how they occur, how to treat,often managed poorly and there is no cure.
There is a private doctor in Wales called Dr Myhill who is fab. I tried to join her surgery though and she wasnt taking new patients at the time...but will be worth a try. She also has a fabulous website packed to the rafters of information and specialises in CFS. Hope this helps a bit...sorry if i have gone off on one.....its all very frustrating and un-necessary.
Reading your replies have already made me feel a thousand times better!!! Simply knowing I am not alone. That others understand what I am going through. As much as family and friends are supportive they simply don't really understand what I am going through. Thank you! From the bottom of my heart!
As for the (so-called) medical "profession" in the UK it seems to me they simply want to treat the lab results not the actual person sitting in front of them. I have felt often this part year they would have been happier simply getting my results and then prescribe (or not!) remotely without any interaction. They don't listen when you are sitting in front if them. They just want to turn you arround and out the door as soon as possible. Would be far easier for them if they just sent you a text with diagnosis and script without actually having to deal with or see you. And who can blame them. After all they aren't suffering. They can just walk ou the door at 5 go home and get on with life. How depressing for them to have to think about us poor sods who don't have that option. Who go home in pain and agony and usually straight to bed because the simple energy taken to get to the appointment has drained us for the rest of the day (if we're lucky. Or the the rest of the week if we're not!!) Sorry I'll climb off my soap box now!!!
Thanks to your advice I have made a few decisions:
1. I am taking control of my life and not leaving it up to the professionals. They may be well trained but if I'm going to get well I need to stand up and take charge!
2. I am going to book an appointment for all the blood tests suggested above. Even if I have to pay for them myself (any one know how I go about arranging private blood tests if needs be?)
3. Once results are in I am booking an appointment with my existing GP to discuss them.
4. I am going to get a copy of my records for my own "files".
5. Having recently moved I can legitametly change GPs - so I am going to!!
Someone mentioned that Laura will haves list of good medics in my area - sorry but I am unsure who Laura is...could some one let me know her contact details?
Thank you again guys. You are all stars. You have given me the strength and encouragement to go on. Just when I was at my lowest. Today is the first day of the rest of my life and it's going to be a better life - I've decided!! :-).
I have a list of 'good' NHS Endos - not sure if there is anyone in your area. We also have a list of Private GPs with a special interest in thyroid problems.
If you wish to have a copy of the whole Pulse article, email Louise.Warvill@Thyroiduk.org. You may want to see a private doctor as detailed below by Louise. This is an extract from the Pulse article (you will soon find out that GP's are not the best people to help you get well - in fact you can get more serious diseases too by being undertreated):-
6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?
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).
Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.
Hi I am hyper not hypo but at 43 can totally understand where you are coming from.
I feel ancient. I ache and shuffle about. I have one health thing after another and with 3 young kids feel like a failure for them. It is hard to go on and yet I am not at all suicidal. I just want a better life. No tmuch to ask is it?
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