Hopefully, if you read this you’ve seen my original rant about the ablation (RAI) of my Thyroid for graves. You will have read that at the time, despite my almost blind faith in the GP and Endo (and their proposed care path), I had my reservations: I felt my condition had settled under the long use of anti thyroid medicine and having had a history of obesity, I was in a good place mentally and physically and told the Docs all this.
Of course, they stuck to the guidelines.
Now…
The result has not been good: I’m fat, depressed, foggy, tired, without libido, low self esteem, ankles swollen, lower legs painful (most of the time), postural hypotension. I could go on but no.
You’d think, wouldn’t you?…
That having presented these symptoms in person, by phone and by pleading email the GP, who in May refused to refer back to the Endocrinologist on the grounds the he knew best (he’s not a bad fella to be fair!), would, after three and a half years of unsuccessful mono therapy (T4 Levothyroxine in every imaginable dose from 50-250 mcg), be prepared to consider putting one, tiny tentative, toe off the off the ordained path.
The goodfella
As I said the GP is a good man. He’s locked in. He needs help. The clue is in the name “General”. For this problem, he has referred me and as the guidelines direct T4 is now the only game in town. The only lever he can pull. He’s such a good man that my last consultation with him finished at 8pm yesterday. A telephone call lasting some 21 minutes. Credit where it’s due: I’d asked for a call back (not expecting one as I know they are extremely busy) and there it was. My phone is ringing and it’s him.
The road to Hell…(hope not)…
…is paved with good intentions. And here’s the problem. He’s a great fella but due to indoctrination, work load and a lack of time for CPD (continuous professional development), he’s probably going to be the end of me. The weight gain alone, never mind the psychological aspect.
The call was interesting though. Since our last chat I have read and listened to various key and prominent workers in Thyroid health. As a simple being, I’ve had to concentrate to hear what’s being said and have learnt some very basic stuff. There is broad agreement which is at odds with my experience in NHS “care”.
Take-aways
My GP has never heard of reverse T3 (as an example) was unaware that combined T3/T4 treatment was “a thing” and was not prepared to discuss it. Would not accept that a dead thyroid might be unable to play its part in the feed back loop with the other glands. Was unaware that T3 had no more risk (in the correct dose) than T4. He went on to opine that the incidence of T4-3 conversion failure was so low, that it wasn’t worth exploring. Finally, he wasn’t aware that testing T3 after the first few, post therapeutic tests, was of possible use in determining treatment.
The first takeaway is, I’m afraid: if you are diagnosed at all (that’s important because most GP’s will look for most other causes for ill health before trying the thyroid tests), you can probably predict every step from there on in so take an active and challenging role from day one.
Takeaway two: The thyroid doesn’t only produce T4 so why would anybody assume that only supplementing that one element, will (or even could) work.
Takeaway three: It would appear T3 medication costs more.
Takeaway four: chose your Endo with care. The Endocrinologist I asked to be referred to does not “do” T3 either. Wow!
Takeaway five: There is (in my opinion) no place for RAI treatment except to save life and as a last resort.
Takeaway six: Key workers in the field do not regard TSH as the only way to assay. Far from it so keep asking for T3 and anything that might help assess your condition more completely. After all, once they have the needle in and have ordered the lab slot, the vast majority of the cost is factored in so why not?
I’m no expert (as they say). These are my own opinions based on limited investigation and lived experience. I do find it interesting how little (in hindsight), I was included in my own life changing treatment.
I did manage to persuade the goodfella to do a broader test suite, including T3. He also agreed that I could look for a more “open minded “ Endo. (Suggestions?).
It will be couple of weeks for the bloods but I think I should bring him on the journey for the sake of his future patients and our own GP/patient relationship.
RANT ENDS
Thanks
Paul
Written by
Bigthensmallthenbig
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Well, I read your rant and I don’t blame you for ranting - then I came to the end of it and discovered you’re a bloke. I honestly thought it was mainly women who had to put up with all that - us being menopausal, prone to hysteria, wanting to be slim etc, etc.
If you contact the TUK office they should be able to give you a list of thyroid friendly consultants or you could post again saying where you live and asking to be contacted by private message with information about thyroid patient friendly, T3 prescribing consultants, that people feel happy with.
Oh I've ranted along similar lines many times....you are not alone here
The medical profession in general are either ignorant of or suspicious of what is ultimately the active thyroid hormone T3 essential to every cell in the body by way of a constant and adequate supply.
Equally this ignorance scares then as they have been fed unverifiable nonsense during their training.....and fear their patient may drop dead!!
Your GP may be a lovely man but that doesn't make him a thyroid expert
I had an endo who was a lovely man but absolutely clueless about my condition....
I decided to take control....all in my bio.
The GPs at my otherwise excellent practice are now aware of what I'm doing, accept this and leave me to it. They see I've improved rather than killing myself, as one of them earlier feared.
Hopefully they've learned something which may ease the way for other patients
Educate this GP ...
An intelligent person should have an open mind!!
Or... jump ship and consult another medic
Post your new results ( well done for that) then we can see what is going on and advise on the way forward.
Last time I checked it was around 0.91 pence per analysis of each blood request ordered.
I read the laboratory can over ride the doctor's request :
i refused to leave my doctor's room until a T3 and T4 test were verbally agreed over the telephone with the Laboratory.
The Lab billed me privately, a month later for around 34 pounds but only sent the results to my doctor.
My doctor thought me very ' lucky ' to have any T3 at all !! ?? !!
My T3 was at 25% and my T4 at 110% with a TSH stuck down at 0,01.
I was refused both T3 and NDT after around 2 years of further delay, denial, deflection and sexual discrimination - ( and all these adjectives and words are not mine but those of Professor Sikora from his talk on how to get Better Treatment ) I ended up doing it for myself in early 2018.
As always, thanks. Yes, I’m beginning to see that this steadfast refusal to properly treat Thyroid issues, discriminates more against the female of the species! From my point of view, I’d gladly help anyone push back. I’m only starting to learn, though I can already see that the needle, T4 and a lack of empathy, overruled by TSH readings leads to a great deal of misery.
Do you know of any NHS endos who will take a more holistic approach to T3 or NDT? Or private?
Last time i checked it was around 0.91 pence per analysis of each blood request ordered.
I think that price should be about 0.91 pounds i.e. 91 pence. I think it was jimh111 who did a Freedom of Information request from a doctor/hospital/lab to get the information.
I've wanted to bribe doctors to get them to do more than just TSH in the past, but never dared to try. It would have been pointless anyway because it is the labs who decide what gets tested, not the GPs.
I just stayed sitting there - it was my appointment slot - by this time I was so ill - I didn't care anymore about anything other than my health which had been been in an ever decreasing circle of wellness for over 2 years - since at around age 65 it was decreed that I was not allowed to run with a suppressed TSH and dose reduced on T4 to get a TSH in the range. irrespective of my views or declining wellness.
It felt like an hour but in reality I was back in my little car within 15 minutes, a bit shaky so just turned on the radio and waited until I had calmed down before driving home.
I'm sorry - I don't understand the other comment and yes, I got the 91 pence from one of Jim's posts.
Personally no - and why I'm DIY ' ing as I went that route and wasted my money once and can't afford to keep this up and also not inclined nor need to trust my health to anyone again at the moment.
Thyroid UK hold a patient to patient list of both NHS and private endo's and specialist - so this might be useful - just email admin @ thyroiduk.org for a copy :
You can always ask for Private messages should you think you have found a suitable specialist yourself
Many specialists are open to video consults so distance doesn't necessarily have to be an issue.
Best bet is arrange the necessary full thyroid blood tests and vitamins and minerals, inflammation etc and post the results and ranges on here first as you can do a lot of this for yourself in preparation for a specialist if you feel uneasy to totally jump ship.
I’ve had a scroll back through previous posts of yours and can’t see that…
…you’ve had your Vit B12, folate, Vit D or ferritin tested.
Given the length of time it’s been between you (fairly unsuccessfully) taking levothyroxine and RAI, it’s very likely your gut absorption has gone down the swanney and you’re low on all sorts of things.
If Goodfella won’t test, it’s not horribly expensive to purchase private blood tests to find out what’s going on.
Think that would be my next move in your shoes.
While you are correct in all you say about T3, if your general nutrient levels are on the low side, you’d probably find it hard to tolerate it, even if prescribed.
And you might find it’s a deficiency in summat else that’s causing some of your woes.
Thanks. I’ve got myself a gut lady and the supplements are in the post as we speak. Good to know I’m not on the wrong track on those thing. Got a poo testing kit (sorry!)on the way too so the aforementioned gut lady can see the analysis.
Next steps are bloods in 2 weeks, discuss the test results, take the supplements and find an informed endo through TUK.
Hello from another bloke who had RAI, though I'm doing "ok" now, with help from this (and other) forums. I did the Zoe test (poo and blood tests) early this year and my gut was well down. I really need to focus more on my gut health. I've just restarted anti-depressants as I can't get my head into finding another job (a mental brick wall) and was watching Tim Spector of Zoe talking abou the link between the gut and depression. Time to add probiotics to my regimen I think!
Could you PM the name of your "gut lady" as it might be interesing? I cancelled Zoe as it's too expensive and entering every ingredient of every meal is too frustrating!
I am dropping off the list of tests I would like, to the gp today so there’s plenty of time for discussion. I predict it will: go amiss, be ignored or the lab will do TSH & T4 only. As per
Thanks for taking this much time! I will digest the info and try to enact as much as possible. I have to drop a list of tests off to my GP prior to testing. The ones he doesn’t do I get done by other means.
oh, thank you. I feel pathetic. You know, really stupid. For presuming the people treating me would, automatically have taken an interest and been more knowledgeable. I didn’t realise the level of ignorance in mainstream practice or even the possibility of it. I mean: if you are a Dr. of something isn’t that an indication of greater knowledge?
You are not pathetic nor stupid though we feel that way, those of us on the same journey admire you for keeping at it in the face of resistance. It sounds as if you just need to find the right endo and you can. I did, and it sounds as if your GP, like mine, will support you. The first endo I saw advised increasing T4, luckily my GP agreed that was not going to be the answer and referred me to another endo who observed that my thyroid was 'not doing anything' and put me straight on T3, perhaps you will have the same result. Best of luck!
Dear Bigthensmallthenbig, (love the name), honestly though you feel pathetic you are not. It's worth noting that being hypothyroid can make us defferential. I am sure that now you have found this group you will find your inner strength again.
Thanks. Didn’t see the point in not having a mildly amusing handle (yours is much cleverer) I’ve emailed TUK yesterday for list of endocrinologists. About three months ago I found this site and posted thinking it would be one of those dusty , dormant, niche forums that you would have the last comment on a question you’d searched, dating from 2013.
Ah but I didn’t realise: so I saw these notices from healthunlocked coming in and ignored them. It was all chat in the group. Not, as I thought, spam. (It’s also on my personal email so less often checked).
Two months later I check one and it’s a reply. Then another and so on. This forum is an actual, living, breathing, informed & useful resource. It’s like chat gpt for thyroid disorders!
As a result, there’s action on my part and it feels better than helplessness, hopelessness. For sure.
I second thyr01d . And I was the same, for 18 years I listened to doctors and endos, believing everything they told me as I progressively got more and more ill, collecting more and more diagnoses, prescriptions and symptoms. But you are here now and you will find your way out…! Consider yourself lucky, if you can! There are untold numbers who never see the light and remain woefully undertreated and under cared for all of their lives, never knowing how much better they had a right to feel.
"My GP has never heard of reverse T3 (as an example) was unaware that combined T3/T4 treatment was “a thing” and was not prepared to discuss it. Would not accept that a dead thyroid might be unable to play its part in the feed back loop with the other glands. Was unaware that T3 had no more risk (in the correct dose) than T4. He went on to opine that the incidence of T4-3 conversion failure was so low, that it wasn’t worth exploring. Finally, he wasn’t aware that testing T3 after the first few, post therapeutic tests, was of possible use in determining treatment."
But his kindness does nothing for his ignorance or more likely, deliberate obtuseness.
Particularly, when he is leaving you to suffer:
"The result has not been good: I’m fat, depressed, foggy, tired, without libido, low self esteem, ankles swollen, lower legs painful (most of the time), postural hypotension."
Given your current health and what you’ve been through in the past, you're doing well to be motivated enough to seek knowledge. No doubt also helped by the good people of this forum -on this post and others such as healthunlocked.com/thyroidu... from two months ago.
Hope you can follow through on all the excellent advice given to date, and wishing you the best.
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
If/when you get T3 prescribed alongside levothyroxine, in most patients TSH is likely to drop very low or suppressed (typically 0.01) …..it’s irrelevant as long as Ft4 and Ft3 are within range
so here’s the craic: having read the NHS guidelines which while tragic in their refusal to allow primary practitioners to mention, much less prescribe T3 but ironic in that once on long term T4 they give a list of reasons for symptoms other than thyroid for ongoing health complaints. One of these is obesity. I wasn’t obese when they started the treatment but they are happy enough to pigeon hole me under that label now.
and I’d hazard a guess that the number of those who are either undiagnosed or incorrectly diagnosed, allied with those who haven’t found the site, far, far, outstrips the 132k by several times that number. There are vast numbers of people (still possibly me, though not if I’ve got anything to do with it!) consigned to a life of permanent pain and misery. And it would appear that the cause is the learned ones we turn to when ill. At least in part. As you say, the gods.
Approximately 2 million people in U.K. prescribed levothyroxine (around 90% are female) ……at least a third of those incorrectly managed…..and quite possible much higher percentage
perhaps another million who could be treated, but can’t get diagnosed
Recent survey via Aberdeen University revealed that high percentage took years to get diagnosed and that around 90% remain unwell on treatment
We see at least 5-10 people turn up here every week having been left on just 25mcg or 50mcg levothyroxine for years or decades
Thyroid disease is one of the most complex, multifaceted diseases….it should not be managed by a GP or diabetic endocrinologist
We need many, many more thyroid specialists
patients also need to understand the only person who can evaluate symptoms is themselves ……with the help of knowledgeable thyroid specialist it is possible to make significant progress
Current NHS treatment will keep patients alive, but often poor understanding/mismanagement results in poor quality of life for thousands of patients
For good quality of life, you the patient need to ensure test full thyroid (TSH, Ft4 and Ft3) and vitamins regularly. Maintain optimal vitamin levels. Also consider possible food intolerances. If necessary be gluten/dairy free.
Most importantly, always take your replacement thyroid hormones every day, on time and correctly.
Always keep good records yourself of how you feel at each dose …..easy to miss the sweet spot…and then to start to feel unwell due to over medicating
will get another endo for sure but I think this GP has potential to help others. Now, I’m no hero but if I can help one other person to be quickly and correctly diagnosed and then put on a more broad minded care pathway, it would mean a lot to me.
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John Dommisse interview by Mary Shomon with contrasting idea about T3 only.
T3?
Difference between Free T3 and T3?
