If I was playing Hypo poker, my "hand" of symptoms would be unbeatable. The only thing which constantly prevents a diagnosis of problems are TSH results. Always plonked right in the middle of the range. Free Thyroxine is just above minimum. 14 in a range of 12 to 22 pmol/litre.
I take D3 with magnesium, 2000+ iu daily, plus my active B12 shows healthy.
Question; what can give the range of symptoms, which are getting worse, without elevated TSH? Symptoms; Weakness, extreme fatigue, vision problems, intolerance of heat and cold, intolerance of alcohol, lack of coordination (particularly legs), tints, balance issues, wakeing up exhausted, often falling asleep during the day, being vertical is exhausting, poor concentration and lack of patience and motivation. This has been going on for years, my GP seems on the verge of giving up, but he has me on SSRI's. Which don't make one jot of difference.
I recently had a brain scan to rule out Acoustic Neuroma, (IT DID), and a full blood work out, which everyone seemed happy with.
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The only thing which constantly prevents a diagnosis of problems are TSH results. Always plonked right in the middle of the range. Free Thyroxine is just above minimum. 14 in a range of 12 to 22 pmol/litre.
This could be caused by a problem with the pituitary being unable to produce sufficient TSH for your needs. More rarely it could be an issue with the hypothalamus which "gives instructions" that the pituitary should follow. These problems cause a condition called "Central Hypothyroidism".
The most common type of hypothyroidism is Primary Hypothyroidism.
Doctors think central hypothyroidism is rare, and so they rarely test for it, thus making it rarer still.
I have an issue with my pituitary and my TSH is often too low for the Free T4 and Free T3 results I get. In the end, over 20 years after my poor thyroid results were first identified, I gave up waiting for a doctor in armour to come riding by on a white charger to fix my health and ended up treating my own nutrient levels and my own thyroid. You may have to do the same.
b) As for thyroid hormones, it would be sensible to start with Levothyroxine only. You would need to buy Levothyroxine from somewhere abroad that sells without prescription. To do this you'll need to create a new thread and ask for sources to be sent to you via private message. Your post will be closed to public replies because sources can't be discussed on the forum. Once you've investigated any responses you've had, be aware that there are many scammers out there who might send you astray in the hopes of conning you out of money. Once you have a link you like the look of send a private message to one of the admins and ask them if they know whether the link is trustworthy.
One of the biggest problems we have buying without a prescription is that many banks and financial institutions have banned people from sending money to online pharmacies. So bear that in mind too and be sure you understand how the website deals with payments.
c) The dose you would need to cater for on starting Levo would depend on you and your general health. Read ALL this link to see how doctors are advised to initiate treatment.
Be aware that you may end up needing to cut a larger dose tablet into a smaller dose tablet. Scalpels (easily sourced on Amazon) are cheap and many of them come with spare blades. You could also try pill cutters. Opinions vary on which of these are the best solution for cutting tablets. I prefer scalpels.
The recommended speed of increase on that link is faster than many patients can cope with, and people on this forum usually leave a gap of 6 - 8 weeks before raising dose. Testing should be performed before any raise or drop in dose, and no changes should be made greater than 25mcg per day. When you get closer to what looks like a good dose you could start adjusting dose by 12.5mcg per day. You might find this link of interest on ways to fine tune your dose :
Looking at your profile it seems that you have been a member here for about 10 years and in all that time you have had many fluctuations. It would seem that at one point you saw Dr Skinner and that you have been on Levothyroxine.
Your fluctuations could suggest Hashi's and I see that you have never had raised antibodies when tested; however, one can have Hashi's without raised antibodies and that could explain your situation.
Have you had an ultrasound of yur thyroid? This can show Hashi's. SlowDragon knows more about Hashi's than I do as she has this herself.
The other possibility is, as humanbean has suggested, Central Hypothyroidism where the problem lies with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism). Central Hypothyroidism is usually when TSH is normal, low or very slightly elevated with a low/below range FT4. I see that you have had low FT4 results, what is the lowest it's ever been?
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
I wrote to my GP this morning and included print outs from the sources you provided, plus notes on Hashimoto's. I'm trying to track down a clinic who will do an Ultrasound (not pregnancy!!), but despite phone messages and an Email.........no response, 2 days later. Private health care!!! I thought an US might eliminate physical issues with my Thyroid, before I endeavour to charge down the road of "Central".I'm not really going to be holding my breath on any action from my GP, but he does seem a decent chap, plus he's prepared admit his limitations in this area, so who knows. Thanks for your help again.
1. No Levothyroxin. GP's talked me out of it, which didn't initially cause any problem. 2.I take multi vitamins, 2000. iu of D3 + magnesium. 3. Gluten free diet, that is my only dietary restriction. 4. No Ultrasound to date, I will look into that.
Seaside Suzie, suggested I ask for anyone in the West Midlands who can give feedback on successful Central Hypothyroidism diagnosis! I live in Shropshire and have easy access to Birmingham, Stafford, Cheshire and North Wales. Greater Manchester is not a hike either. Thanks.
You would be more likely to get a response to this question if you created a new post altogether. It will be closed to responses but that is standard practice for such questions. Opinions about individual doctors have to be expressed in private messages only, not put on the public forum.
I had a nasty range of thyroid symptoms when first tested, even though my TSH was 1 and my T4 and T3 were in range. I found I had high antibodies though, and it was only addressing the underlying causes of my hasimotos that helped.
Find a different doc. I found an endo who stopped looking at my TSH and looked at T3, T4, FT4, FT3. I changed to NDT, make sure I take enough Vit D and Magnesium. I have a form of hypothyroid that does not produce enough TSH. The NDT helps me tremendously.
Well I downloaded and printed the BMJ best practice information and the ncbi.nlm.nih.gov/pmc/articl... and forwarded them with an extensive covering letter, to my GP before Xmas. Not even an acknowledgement of receipt!±!± In the meantime symptoms are getting worse. Vision, particularly my ability with near vision (eyes tested and examined and no medical issues found). Also my ability to "fixate" when walking. This morning I had a pronounced lisp which made speaking difficult . This is on top of balance/co-ordination issues, weakness, nil stamina, freezing hands and feet, almost falling down drunk on 2 glasses of wine, sleeping during the day, weight gain and random aching joints, shoulders today, wrists on Saturday.
You might have no alternative but to self treat I'm afraid. This is what some of us including me have had to do because we were fighting for a quality of life.
I'm afraid I list my temper with the GP yesterday. He hadn't even read my letter, never mind the BMJ and NCBI print offs. He just continues to prescribe for each symptom (this time Vertigo!) and disregard the ones that don't "fit". (everything else!) He seems totally incapable of joining any dots.
Nil response. I wasn't loud or abusive, just profoundly indignant and blunt. He didn't seem to think it odd that he had not read my letter or that I was offended by that, assuming, of course, he hadn't or thrown it in the bin. What really surprised me was that he had, at the very least, no medical curiosity as to the contents of the printed BMJ article on Central,. He had already emailed a prescription for Vertigo, despite my assurances that the room didn't spin, and my questioning as to whether vertigo would explain my fatigue, weakness, cold extremities, blurred vision, weight gain, poor coordination, speech issues etc., etc.. I left telling him I would return for Covid vaccine and maybe to have a boil lanced if I was desperate! Probably not the wisest parting shot, but I was feeling quite ill and a touch "brittle" I have to say! I'm waiting for a supply of Levo, for the DIY approach!!
Has anyone got a view of the effects of alcohol when Hypo. It is a virtually instant reaction to relatively small amounts of beer or wine. I feel fine until I ask for coordination of legs. An hour later I'm back to what passes for normal these days. The effect `I describe as ~Bambi on Ice. No rash, no nausea etc. It first happened about 2 years ago, sat in a pub talking to friends, enjoying a pint, got up to go to the loo.............Bambi!! The same thing happens sometimes without any alcohol involvement at all. Standing talking and drinking tea for 30 mins the other day....................Bambi again when I go to move. Standing at my lathe working for an hour............bambi when I decide to return to the house!! Alcohol just seems to accelerate this issue.
That's it I've hit the buffers with my GP. He refuses, point blank, to refer me to see Professor Weickert at Coventry. His response, when presented with my Thyroid UK list of symptoms, 3/4 ticked, was "those symptoms could apply to several ailments" ! My argument that maybe seeing the Prof might at least reduce the list of possibilities, fell on deaf ears. I've spoken at length to my CCG who can't see any possible reason for his stubbornness! They suggested maybe changing surgeries, but, of course, that doesn't guarantee you won't meet with similar intransigence there.
Well I've registered with a different Doctor/Surgery. I've had blood tests for M G.........negative. Still awaiting follow up, but again no breath holding!!!
My New GP has seen me (that was an effort!) Did some basic Neurological assessments. Balance, sensation, finger tracking etc. Together with usual temperature, pulse and BP. Low temp and slow pulse didn't register! But I'm off for another Brain MRI! Question; Will an MRI reveal Central, i.e., any pituitary , Hypothalamus issues, even if the GP doesn't specifically request a concentration in that area? TSH within range and Pituitary issues being rare, still seemed to pre-determine his scope for investigation!
I have other issues developing which seem to point in that direction. e.g vision and bladder.
My Optician tells me that a field test often reveals Pituitary issues due to the proximity of the optic nerves, and he is happy to roll out his kit, to confirm, or otherwise, the results of the MRI.
The bladder issues can be down to a failure of the posterior Pituitary failing to produce ADH, due to inter-related causes.
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