I had a follow up appointment with the Endocrinology registrar who told me he cannot prescribe any medication to me but suggested I look to research into buying T4 abroad. He said he wouldn't advocate for me to do it but if I am desperate to see what I can find out. I feel like I am just hitting brick walls wherever I go.
MS has now been ruled out after an MRI was done a couple of weeks ago, my symptoms are worsening and I am getting very down about it all and so, so frustrated. I can't afford to buy meds from abroad and I can't afford to go private either. What else can I do?!
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saltylu
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All of my results came back normal for the adrenal testing, my TSH was 0.65 and my T4 was 9.7 (9-19). I am currently just taking 3000iu of Vitamin D with 75ug of K2 as a spray. I haven't been able to afford to do a follow up Medichecks test as I've had so much time off work I'm not longer getting sick pay. I went to see a specialist optician about the flashing in my eyes and he couldn't see anything abnormal, my field vision tests were completely normal and no signs of cataracts etc.
I'll be restarting to the B vitamin complex once my financial situation is better, but right now I can't afford the extra to get the good ones.
I know, but they won't. I've spoken to the registrar there 3 times now and he is absolutely adamant that there is something complex and multisystem going on but that it isn't to do with any hormones.
When I start getting the flashing lights in my vision it’s always a sign that I’m starting to get overmedicated. If I ever let my TSH go below 1.50 I feel awful and get the flashing lights
I've been to see a specialist optician who has said there is nothing wrong with my eyes. I've also had an mri on my head to check for MS but that has also been ruled out. I can't afford to go private and I can't afford to source the hormones privately either.
They wouldn't even entertain there being a hormonal problem at the endocrinology department. My MRI also showed my pituitary gland is normal with no signs of tumours or other abnormalities.
On what results is he saying he can't prescribe any medication but is advising you to source your own Levo? Can you post your latest results, with reference ranges.
I've had a very quick look at your results in previous posts and this has been mentioned before. I'm just closing my computer down for the night now but I will copy and paste my usual reply when there are results like yours, so if it's already been said I apolgise, but you may find something useful:
I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed (you can only read the Summary but make sure you click "Read More" as well:
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.
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I think this is the line you will have to pursue and I think you will have to stick at it. Take the evidence to your appointments with your GP. If necessary see different GPs until you find one who will listen. Badger them to find you a thyroid specialist, ask them to do their homework and find you someone who knows about thyroid and not just diabetes. Take someone assertive into your appointments with you, someone who will speak up for you if necessary. I've had my GP talk over me and wont let me finish, if this happens just say "Excuse me, you haven't let me finish". Even refuse to leave the room until something concrete has been achieved in the way of moving forward with this. Sounds daunting but sometimes we have to put up a mighty great fight to get help.
Thank you for your reply. I've already had a referral to the endocrinology team, including the thyroid specialist, and they have discharged me from them as they do not believe that what I have is hypothyroidism at all. It is really frustrating as their is a thyroid specialist at the private hospital close by but it is £190 just for an initial consultation and I genuinely cannot afford it. I have been back and forth to about 5 GPs in the surgery and all they have done is push for a CFS/M.E. diagnosis which I have now had a referral for.
I will definitely print out more information about central hypothyroidism but I know that without the levels going out of range I will probably come up against another brick wall.
I really appreciate the information you have given me here.
I would try an endo on teh TUK list. it's so obviously central hypo from those results that I can only think that your endo is NOT a thyroid specialist at all. There is probably no such disease a CFS, just poorly treated thyroid and adrenal problems. I would consider buying your own NDT, if it was me - actually it was at one time and I did. Just because there is no obvious pituitary tumour doesn't mean that the hypothalamus is OK or that there isn't something else wrong with the pituitary
The endo consultant that was dealing with my case was on the list, it's the reason why I went to him in the first place. I can't afford to buy my own medication, I am in universal credit and not getting paid as much as usual as I am on sick leave. My GP won't refer me again as I have been discharged from endocrinology at the only hospital in my city.
Thank you SeasideSusie, It's always good to be reminded of the above as my son has low FT4, normal TSH and in range T3 and I am sure he is hypothyroid but this has been discounted, although he is having checks carried out by Great Ormond Street.
I'll be keeping the above in mind to discuss and as always appreciate the information you provide.
I may be missing something here, but I have plotted your results from your previous posts and, although I confess that I am a historian and not a doctor, your pattern of TSH within range and looking quite healthy, plus FT4 dropping in and out of the bottom of the range and FT3 just doing the best it can, screams secondary hypothyroidism to me (its what I have and it took a long long time to get treated).
If FT4 is low without raised TSH, a doctor should suspect secondary hypothyroidism. Indeed the guidelines should lead them there. So-called subclinical hypothyroidism would show a raised TSH, but FT4 within the reference range and that doesn’t look like you.
Time to do some research and go back and bang the table. Good luck.
I've already said that to a couple of GPs but because my FT4 is within range when I've had the tests done at their labs they won't even humour me when I ask for a trial of thyroxine. It's literally like banging my head against a brick wall! I have one GP I can try and get an appointment with again who might listen to me but as long as my FT4 stays within range and my TSH stays as it is the endocrinology department want nothing to do with me it seems.
endos and GPs are generally pretty rubbish in regard to anything thyroid related. I am not surprised you are getting knocked back it happens all the time especially if you happen to be slightly unusual. Central hypothyroidism is a pituitary problem. It might be worth phoning and having a chat to pituitary foundation, they have a helpline and pituitary nurse who can advise, they may be able to suggest a pituitary specialist who would be more helpful. In my experince on this forum however most people if not everybody who has a T4 in the lower half of the range has hypothyroid symptoms but doctors show no interest in any blood results that are within range and sometimes no interest if they go below.
I have been mocked recently re one of my grandmothers suggestions re thyroid but it is free and I have found it helpful. She thought that a lot of thyroid/ fatigue issues were adrenal in origin and that the adrenal gland had become sluggish and unable to support thyroid gland. Her suggestion was to prioritise safety in life and think every morning about the threats to your safety you face and write a list of priority's on how you are going to keep yourself safe. It make sense because the adrenals are very sensitive to how we think and responsible for fight and flight if we feel very threatened.It works brilliantly for me.
It sounds like you are getting some neurological symptoms that may well be B12 related. I read on patients choices a long while ago that people with neurological symptoms should have a trial of B12 injections regardless of blood results. You might be able to find this on patient choices and show Gps and it might be worth you looking on pernicious anaemia forum or at Dr Chandys B12 support group ( google).
Unfortunatly we live in a country with a very corrupt health service and doctors are very under the thumb in regards to not offering good treatment. You may well be just banging your head against a brick wall trying to get help from them or just end up offered medications to mask symptoms that are not good for your health long term. I would be inclined to not waste too much energy or money trying to fight the system but focus of being as frugal as possible to enable you to self treat. There are some thyroid hormones called metavive available from Uk and not very expensive that might help you get back on your feet.
Thank you for your suggestions, I am currently keeping a diary of my symptoms so I might add in the threats to safety and see how I go from there. I also have the direct email for the Consultant at the hospital as I work there but I do not want to abuse it and get into trouble for bothering him a lot. I've sent him a quick email this morning to see if it is something he might think about but if not I am going to have to try and save some money to go and see the private endocrinologist as they are also a thyroid specialist and might be able to give me more information.
Thank you mandyjane for your suggestion to contact The Pituitary Foundation. I'll be trying that. Saltylu - I am in the same situation as you. A lot on this forum have said my results demonstrated Central Hypothyroidism. I was lucky enough to get an Endo referral for other reasons. The Endo dismissed my concerns about low FT4 and possible CH because my T3 was within range and because FT4 is inactive. They simply didn't recognise it. I think getting a diagnosis of CH is incredibly difficult - and yet I am very symptomatic. I am focussing on optimising my nutrition and lifestyle as my best way forward - it seems to be all I have. I wish you luck on your journey x
The BMJ article doesn't mention FT3, only FT4 and TSH
In central hypothyroidism, free T4 is low and TSH may be low, normal, or minimally elevated.
And the EndocrinologyAdvisor link says
Key laboratory and imaging tests
The hallmark of CH are low serum levels of circulating free thyroxine (FT4) into the hypothyroid range associated with low/normal serum TSH concentrations. Some patients with CH with a predominantly hypothalamic defect may have high serum TSH levels, a potentially misleading diagnosis which may be confused with subclinical primary hypothyroidism. Although serum TSH levels may be normal or high, the TSH is biologically inactive and cannot stimulate the thyroidal TSH receptor. The measurement of serum free triiodothyronine (FT3) levels is highly unreliable, as more than 30% of patients with CH have normal levels of this hormone.
So it doesn't necessarily need a low FT3 to diagnose Central Hypothyroidism. Maybe point this out to endo/doctor.
Hi mandyjane, I really like your grandmother’s theory, it seems to ring true for me. I am going to try it so thank you for taking a risk of ridicule for the sake of helping someone, you’ve helped me, any more info welcome.
Regarding the adrenal glands, pantothenic acid; vitamin B5. I'm doing that, now, because even on T3(self-medicating)my weight is increasing, my sleep remains poor, brain fog and always dealing with fatigue. Based on what I know, I began to ponder if the problem, or part of it, is with the adrenals. I'm taking 3000 milligrams of pantothenic acid three times per day; with breakfast, lunch & dinner. Just doing this on my own, not at the recommendation of a physician, but B5 is an anti-stress vitamin. Also taking vitamin C, 2000 mg, with each dose of B5.
My best advice, saltylu; Don't give up and don't give in to despair.
I've had my adrenal function tested and everything looks okay there, but I'm going to look into different supplements when I am at a point where I can afford to again.
Thank you. I have the work email address for the Thyroid consultant at the hospital so I might email him and just suggest it to him and ask what he would advise I do. I don't want to email him too much as I know it won't get me anywhere.
Hi saltylu , I totally understand your frustration, am in a similar situation to yourself going backwards and forwards to the GP and them not entertaining/understanding the possibility of central hypothyroidism.
I was lucky that the GP started me on Levothyroxine which helped, but from what I’ve read on here, I think it’s best to pursue the diagnosis of central hypothyroidism before starting thyroid medication.
The first Endo I saw thought I didn’t have a problem with my thyroid, and either I was just one of the small percentage of the population with low thyroid levels, or that I was having a mid-life crisis!
I’ve got BUPA cover so I went to see another Endo who treats based on symptoms, started with Erfa which didn’t help. But as my TSH, Free T3 and Free T4 are still low, he’s given me T3 which is making a big difference and now agrees it’s possible that I have central hypothyroidism. But as it’s treated the same way as primary hypothyroidism, he doesn’t think any further investigations are needed.
You’re entitled to ask for a second opinion so ask your GP for this and look for an Endo on the Thyroid UK list, as they’re likely to be more experienced with central hypothyroidism and be willing to treat you. I’m in Devon and travel to Somerset to see my Endo but it’s well worth the trip! Good luck and I hope your GP can help you some more.
The registrar who I saw again yesterday was one who is attached to the consultant who specialises in Thyroid issues. I still haven't seen the actual consultant but I have been discharged, and apparently the registrar has spoken to the consultant about it all too who also agrees that it isn't an endocrine issue. I wish I could afford private health insurance/an appointment to see a private endocrinologist but I am unable to at the moment. It is so frustrating!
Hi saltylu, I would really, really recommend seeing someone from the Thyroid UK list of recommended consultants. There are many doctors who call themselves thyroid specialists that are in fact not that special you can still do this on the NHS but you might have to travel a bit to get someone good and it will take longer than going private. Good luck and keep going, it will be worth it in the end!
Hi. I’ve bought T4 over the counter in Spain without a prescription , it was around €3 for 100 tablets, the brand is Eutirox levotiroxina. I believe they are a a German brand. If you know anyone who is going they could pick them up for you
Just a small point about flashing eyes. This is usually migraine not necessarily with a headache. I get it sometimes but never have a headache with it, though I have suffered with migraine headaches in the past.
Very sorry to read your post, my heart goes out to you. Your symptoms are in my humble opinion, indicative of hypothyroidism. If you read up on ‘mitochondrial dysfunction’ which is a bit sciences but this process relies on t3 present to produce a function which creates ATP stores which is energy. This happens in every cell in the body (well almost). Hypothyroidism slows everything down and so less t3 means less mitochondrial function and less physical and mental energy. Thus labelled CFS and symptoms similar to MS. Anyway aside from the research you can do, can you go back to your GP and ask for a second opinion from an endocrinologist. You can check around online to find a good one from reviews etc. If you live near London you will be spoilt for choice. And it is your choice to go anywhere on the NHS. The basis of your request is that a low TSH infers hyperthyroidism and a low t4 (which yours is very low) indicates hypothyroidism. Also doctors are always told ‘read the patient not the numbers’ so make a list of how you feel to be viewed along side your blood test. I know it’s hard and exhausting especially when you don’t feel well, but it could be worth a try. Good luck.
Hi saltylu sorry to hear that you are unwell. I was in your position 5 years ago with a low FT4 and low TSh (but both within range) and feeling dreadful. My GP hadn’t heard of hypothyroidism type 2 (secondary/central) and I had to go private initially to get a diagnosis. I then had a 5 year struggle to get my medication on the NHS but I have finally received my medical exception certificate. I contacted the pituitary foundation and they told me to ask for an NHS referral to a specialised pituitary unit at a nearby NHS hospital. I too had an MRI scan that showed no tumours, but I still have the condition. I hope you get the help that you need soon 🤞
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you can still do this on the NHS but you might have to travel a bit to get someone good and it will take longer than going private. Good luck and keep going, it will be worth it in the end! 
Still feeling rubbish, will I ever feel well? Sorry for a pitiful post.
Hi I am new to Thyroid UK Support, but pleased I have found out about it, as I think I have Hypothyroidism [ I have fibromyalgia ] and am 
Still feel hypothyroid, am feeling down. 
Can anybody relate to how I am feeling?
