Hope someone will have some advice on what to do about the situation I am encountering with my G.P.. Sorry in advance for the long tale of woe.
Started about 2 months ago when I received the results of my Lab test which confirmed I have inherited the faulty DI02 gene. I saw one of the G.P's at my surgery who had just joined the practice. He was very nice but obviously did not know much about underactive thyroid and all he kept saying was '... How do you know all this stuff...' when I explained about T4/T3 conversion and T3 being the active hormone etc. He just seemed to be totally overwhelmed and said he would need to seek further advice. I asked on the day to be referred onto an endo as I was aware that G.P's don't prescribe T3 without instruction from a consultant endo. I requested that I be referred onto a local hospital but preferably not to one of the endo's I had seen previously as I was not impressed with him and he had reputation of not being sympathetic to prescribing T3 to patients. We discussed another endo (who he knew personally) at another local hospital who I had checked out and who I know has prescribed T3 and I said I was happy to travel. He said to contact him if I hadn't heard anything within 2 weeks. I let 3 weeks go by and rang the surgery to be told that local endo hospital and (I quote) '... told G.P. to run some tests...' These turned out to be a full set of bloods but not including T4/T3. Saw another G.P. (first one had gone off to do some further training!!!!!) who arranged for blood tests to be done. Took the blood test, saw yet another G.P. at the practice (another newbie) who was clueless. She said all tests were fine. This was not quite true. 4 out of range! including B12 and Ferritin. She advised that I needed to see senior practice G.P. to discuss being referred onto endo. First appointment cancelled by practice and rearranged for this Tuesday.
What I am asking from those who have been round the block here with awkward doctors is... what are the guidelines with insisting that you are referred on and can you actually insist they refer you at all? Are you able to request a specific endo if you are prepared to travel? Can you pay for a specific endo?
I want to be sure of my facts because I suspect I may be in for a robust conversation with the senior partner.
FYI- I have Hashi's (with vitiligo and dry eye syndrome), currently on 100/125Mg T4 alternating daily.
Many thanks for any advice....
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ATVMWF
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Have you had full Thyroid and vitamin testing and are all four vitamins optimal and FT4 in top third of range?
Once thyroid and vitamin levels are optimal, if you still have symptoms, you are entitled to referral to an NHS endocrinologist. But wether you can get an NHS endocrinologist to agree to prescribe T3 is tricky. It's a Post code lottery. Many CCG's apply heavy pressure on medics not to prescribe due to cost
Have you had the list from Dionne at Thyroid Uk of recommended thyroid specialists who will prescribe T3
Assuming you can get referral, initial prescription is via hospital pharmacy for first 3-6 months. Assuming trial goes well then endocrinologist will write to GP and ongoing prescribing and cost transfers to GP (who may be reluctant)
I don't have the results of my TSH and FT4 but will ask for them on Tuesday when I see G.P.
I know after recent Thyroid tests (taken around July) G.P. wanted me to drop back to 100mg (from 100/125mg alternating day about) as TSH was she reckoned '...too low at 1.0...' we discussed and I basically said I did not agree and felt awful if I did this. Referred her to endo's letter from 4 years ago and eventually she agreed I stayed on same dose.
All that said, I still felt awful. No energy, joint pain, chronic pains in stomach-IBS, dry eyes, feeling cold, can't sleep etc etc.... so I sent off to Regenerus for the DI02 test, which came back positive for a faulty gene and highlighted polymorphism.
Hence, the 2 months of G.P appointments I listed in previous email and the blood tests they ran which I have been attempting to interpret below. 4 were out of range and I have listed some of them below.
Vit D- 71 nmol/L (Ref >50nmol/L =Vit D sufficiency)- normal, although I have been advised to take supplements.
Serum creatinine level 100 umol/L (45.0-84.0)- OUT OF RANGE
GFR calc abbr MDRD- 52mL.min/1.73.m2 - consistent with renal impairment
Serum folate level- 3.2 ug/L (3.9-26.8)- OUTSIDE OF REF RANGE
Haematocrit- 0.466L/L -(0.36 - 0.46)-ABOVE RANGE
Red blood cell count 5.04 (3.8-4.8) - ABOVE RANGE
Retic HB equivalent- 34.9pg (28.0- 35.0) advise retest as just in range.
Iga anti-TTG antibody - <0.5U/ml (<15.0)-Normal. I think this is the test for Ceoliac?
Researching some of these results they do seem at odds with one another. The low folate level would suggest something is going on and that I am possibly on my way to a B12 deficiency (my mother is a sufferer and requires injections) but the high blood count suggests not, very confusing!
I am worried about the renal issues and will discuss this as a possible cause for my overwhelming tiredness. I also have a cousin who is hypo and has renal failure.
Prior to receiving these test results I decided 8 weeks ago to go GF following the advice of the geneticist when we were discussing the lab results of my DI02 test. My IBS and stomach issues have vastly improved and my hubby has also commented that the loud gurgling noises from me whilst in bed have almost ceased. I would certainly recommend that Hashi sufferers try for 4-6 months to see if they gain any improvement.
I don't have the list from Dionne @ Thyroid UK but will email her.
I am aware that there is an endo working privately at a local hospital who has prescribed T3 in the past (N.E England). I have had some experiences (not good) with some endo's at a major teaching hospital in area and we agreed to disagree about diagnosis and treatment. It is the only time in 38 years I actually witnessed my hubby come anywhere near close to losing his temper! He really did not care for the attitude of the endo we saw, thought him very dismissive.
I suspect like most thyroid patients I am capable of researching and understanding (up to a point) current thinking and research papers on the condition. I can describe the effects of this condition is having on me but the medical fraternity just don't want to hear what we are saying. They certainly don't give us the respect or the credence that we may actually know something about the way it is affecting our health and wellbeing. I am heartily sick of taking print outs of research to demonstrate the point I am trying to make to endos'/doctors (I did when trying to get referred after discovering the faulty gene) but the response was that they don't have time to read even a pertinent excerpt. I despair!
Sorry for the rant. Will let you know how I do and will get copy of TSH/FT4.
Keep up the good work as you provide a beacon of light in an otherwise very, very dark world for us Thyroid sufferers.
I am sorry that you are having such trouble in getting the help you need. I totally understand how difficult it is to get some medics to listen when their minds are closed. Don’t give up: there is light at the end of the tunnel.
Thanks for the kind words. It certainly helps when you feel you are battling to overcome the medical fraternity and just get what many people expect....a normal life.
What can I say....we discussed the blood report that I posted part of in previous post. He stated he was '...not unduly concerned about the eGFR and red blood count...'
He dismissed my concern about out of range creatinine levels and links to hypo/Hashi's, even though I referred to 2 research studies. Thought I was just a bit dehydrated! What I raised a concern about was that the level has been creeping up steadily over the last 5years...……….
He refuted that my B12 was low but did think I needed folic acid and prescribed 5mg tablets/1 pr day! Mentioned I should be rested in about 3 months.
We had a long discussion about the DI02 report and my request for a referral to an endo. He said that local endo team considered my treatment to be OK and had told him a referral was not to be considered at this point. He said that the conditions had changed in the last 20years and as a G.P. he had '...no discretion...' to refer me elsewhere, he hinted that the CCG were discouraging it. I said possibly because of the cost of T3 treatment...were they not aware of NICE guidelines from July 2019! He declined to comment.
Upshot was that he thought that my fatigue and sleeplessness could be down to other medical conditions!?! and has referred me to a sleep clinic for sleep apnae.
Basically the appointment was a waste of his time and mine! I am sure you have heard all this before.
I will be following up a private endo, taking yours and others sage advice and supplementing from other sources and restesting privately in about 8 weeks, or so.
What I would find useful and I suspect other people would as well, would be a quick spreadsheet, or handy link that could be referred to. What I am thinking is something along the lines of-24 hours before your blood test, stop taking folic acid. If you need a full thyroid panel done go to..... etc If this already exists then I apologise. As I say I am a relative newbie on site.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Well I'm in Cornwall and we tower above, in the red, on the T3 graph - but don't be fooled, this doesn't mean anybody is writing anything down here either.
I've have seen one endo since RAI for Graves in 2005. and that was in early 2018.
I was refused a trial of T3 since my TSH was supressed and told " I'd be picked up again in 6 months time " - well, that summer came and went, as did my 3 letters to both endo and doctor and the several telephone calls I was promised would be made to me by the endo's never happened - I got to know the secretary quite well, on first name terms, and felt her embarrassment when she heard my voice again.
I suspect that there are no new patients on T3 down here and do know that people established on T3 are being called in to be reassessed and encouraged to switch to Levothyroxine.
I guess it's one way to try loose the lead on the CCG county comparison tables.
It is disgusting, deeply concerning, and not what proper doctoring is all about.
Well, she did me a favour.
In my last letter to the endo and my doctor in the September I advised that I was now going to self medicate as I couldn't wait any longer. I said I'd happy to have the yearly thyroid check up providing a T3 and T4 were run alongside the TSH blood test.
I've not heard a word from either, my stress levels have come down, and thanks to this amazing website and a few books I'm doing ok. a work in progress, but much improved.
Apologies for late reply, still getting used to this site. It appears that nationally NICE and NHS England have sent out the smoke signals that thyroid issues can be adequately treated via little white pills and that doctors should not be unduly concerned that symptomatic patients who are clearly unwell should be of concern. After all, the majority are women of a certain age and are 'hysterical' (think swooning Victorian ladies here). WRONG! Significant percentages of thyroid patients cannot ALL BE WRONG, simply depressed and neurotic-not just in the U.K but globally.
Your attempts to correspond with an endo to get treatment is absolutely disgusting. We all know the NHS is in a parlous state but it is almost as if they were ignoring you because they suspected they would not be able to answer your questions, rather than provide a trial of the drug your required. I would be interested to know how you sourced and self medicated and the trials and errors you went through on your journey.……...
Well, put simply I purchased both T3 and NDT myself and trialled both.
I made sure my vitamins and minerals were optimal and having read and reread from here and other places, and books, did it for myself, it took over a year to get my ferritin up, and I've been self medicating with NDT since the beginning of this year.
I over medicated on T3 - wasn't a good thing, but guess we all can do this, as we don't realise for ill we are, and have difficulty remembering and knowing how well we can actually be.
Anyway, should you wish to check out my profile it's all there, along with a load of answers I've written to help people in a similar situation.
Thanks for the reply. Will check out your posts and when I get my vit's up to optimal level and have completed tests will certainly consider flying solo....
My original input was just about the T3 league and that Cornwall is winning, and way out front, but actually it's all misleading, as I can't get prescribed and people I know are being taken off T3 and told to try some Levothyroxine instead.
This is not a decision of good doctoring but a financial consideration to reduce the lead Cornwall has in the sweepstake.
If they had a rubber no doubt, they would be trying to rub out our towering column, so to fall down into line with other CCG's areas and not get the flack they are obviously getting.
Sorry, I digress. I think the doctors follow the guidelines to the letter, and if the CCG isn't wanting T3 prescriptions written, so be it. Doctoring as you and I understand it, is not there, unless you can afford to pay for it.
So yes, the doctor is a human being, but accountable to the computer screen to follow the dictate laid down by the people who pay his salary.
I hope your GP practice are more supportive on your next visit 🤞
I suffer with very dry eyes too- my ophthalmologist recommendedVisuXL eye drops for premium dry eye relief and recovery - these are really helping me (bought from Amazon)
Your battles with your GPs and regional endos remind me of the first 20 years of my own ill-health (40 altogether) that I spent trying to reason with them, supporting my pleas for help with evidence from published research. As you put it eloquently in one of your remarks further up, the profession has little respect for patients' ability to assess their own health, or for any natural intelligence or educational attainment that enables learning and research.
What to do? You need to cover all your nutritional requirements as SlowDragon has advised. Iron status, B12/folate, vit D and magnesium are crucial parts of the picture. That still leaves you with the genetic conversion problem that no-one has yet addressed within the NHS.
You mention that you live in north-east England, as do I. After warnings from fellow patients, and my 'consultation' via letter with one prominent thyroid researcher in the region, I refuse to have anything to do with the endos here. I can't name him on the open forum, but you can send me a message if you'd like to know. I'm tagging LindaC who has more extensive experience of NE endos; she may well advise you to run for the hills! However, you may wish to persist with the NHS for a while longer, if you need to satisfy yourself that you've exhausted every avenue of free treatment. After that, self-treatment is an option. Not easy, but it can be done.
Indeed Hillwoman - I'd say run for them thar hills! In the shoes of anyone relatively new to this, if I'd known then [2008/09 - but already hypothyroid in 2003 + 2007 - just not told I was... sitting there in 2007, looking like those late 1800's before and after photos, PLUS with a list of visible signs/symptoms] what I know now, I'd find some other way, because you may well end up in a worse position than you are now.
Given this current climate, over the past 4 to 5 years so much has tightened, even someone willing to prescribe will end up curtailed. There has been and now is an even stronger concerted effort to thwart any kind of individualised [choice] treatment of hypothyroidism, which goes against any notion of science.
Science is not what's going on here... Boys' Club Misogyny is the Order of the Day, which also serves to cover up their ignorance. Charlatans and Quacks abound. Beware....
Yes, misogyny in medicine is a big part of this. I mentioned on the forum months ago that I intended to do a post on the subject, with reference to two recent books. I still intend to, but life (and health) keeps getting in the way.
ATVMWF You will probably be better off in the long run doing what many of us here have to do, which is to self-medicate. I always feel uncomfortable advocating this from the financial point of view (as well as being concerned about the problems of reliable non-prescription supply), because not everyone can afford to buy thyroid replacement.
Exactly - it is appalling that people are forced to cobble together their own health, given the long history of hypothyroidism + many of the Hypothyroid Greats some of us have had to read to get a good grounding in this discipline + the good works of diogenes, helvella and so many more on here AND pay for it to boot.
Looking forward to your intended post H. Yes, 'health' does so get in the way, take care and be well. xox
I was not greatly impressed with an endo (who spoke all Greek to me) whom I saw approx. 17 years ago and then again 4 years ago at the big local teaching hospital near a famous football ground. If you are a N.E. local I am sure you will be able to work that one out LOL.
I very much agree that the lack of overriding concern about not providing adequate treatment, the often dismissive attitudes and G.P.'s mantra about having their hands tied by their respective CCG, is becoming extremely suspicious and tiresome. It does make you think that there is a touch of misogynism creeping in. I do wonder how many male hypo thyroid sufferers have been denied any type of treatment, or referral onto an endo? It would be an interesting exercise to see whether the denial of T3 or other forms of treatment is gender based.
I think medics of previous generations would be aghast at how the profession appears to becoming immune to the stark reality of how this condition manifests itself and the affect on the daily lives of the patient in their care. They are more worries about budgets and how they run their practices, which are in effect, small businesses.
I would like to have a private chat but unsure how I can contact you privately as I am a relative newbie here. Please advise.
I think with regard to hypothyroidism men suffer from poor treatment in much the same way as the women, but I'll say more about this in a new post, because sexism in medicine is a huge subject.
If you want to chat privately, just go to 'Chat' at the top of this page, click on 'Compose' and start a new conversation by entering my name in the appropriate box.
Have you researched the work of Dr Coimbra to treat your vitiligo? He is a professor of neuroscience and successfully treats vitiligo and MS, among other things, with Vit D..
You’re welcome. Considering that Dr Coimbra has been using Vit D to treat autoimmune diseases for 20 years and is feted in his own country I find it amazing that he is not well known here.
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Gp advice before seeing endo
Advice before GP phone consultation, please?
Disasterous G.P. appointment apparently I don't need treating. Evidence needed.
Unprofessional Irish G.P
Numb fingers - advice required
