I was hoping to hear about what experiences you've all had/been having with your GP's/Endo's regarding your issue, and their attitudes towards it.
Since my diagnosis I've been seeing the same GP whom I presumed was knowledgeable and helpful until I began reading this forum. Since my diagnosis 12 months ago, the extent of my treatment is Levo and TSH & T4 tests. Is this similar to everyone else's experiences? I'm still stuck in bed 18-20 hours a day and unable to function cognitively, but as my 'levels are normal' there's nothing they can do.
I've since educated myself thoroughly on the ins and outs, and all the potential causes of this, and its slightly worrying. I've not been offered a referral to find out what's going on, any more in-depth tests whatsoever to check conversion, I've simply been put on Levothyroxine. It's opened my eyes to how much we all trust 'the smart looking bloke sat at the desk' and presume they know the ins and outs of every condition.
I'm in again tomorrow and not leaving without progress, be it a referral, a slight increase in Levo to take my t4 up ths down, or exploring the idea of NDT with him.
So my questions are: How are your experiences with your doctors? Do you feel as though they understand what's going on and have the knowledge to deal with you?
Cheers
Matt!
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mattioso
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Most of us are on the forum because of bad doctor/ endo experiences. Many just stay unwell as are too ill to help themselves, many find an answer in the way of self medicating with advice from other members and some eventually find a national health endo who actually help them.
We have all had our problems the same or similar to your own.
Mattioso, I don't blame GPs, they're not specialists. They're guided, and in some cases, hampered, by thyroid protocols drawn up by endocrinologists and other specialists. Local agreements may mean that T3 isn't tested in primary care and if you can persuade your GP to order FT3 the lab may decline to test it unless TSH is <0.03. The lab looks for indications of hyperthyroidism when testing FT3, not low T3 in hypothyroid patients.
Your TSH 2.4 is slightly high for someone on Levothyroxine replacement and your FT4 could be higher. A dose increase should help. TSH 1.0 is also normal and most people are comfortable around 1.0. Read Dr. Toft's comments in Treatment Options and show it to your GP if s/he's reluctant to increase dose.
Ask for thyroid peroxidase antibodies to be tested. If they are positive for autoimmune thyroid disease (Hashimoto's) a 100% gluten-free diet may help reduce flares and antibodies and relieve some symptoms. G-f may be worth trying anyway, sensitivity can cause a lot of symptoms, including cognitive dysfunction.
Also ask for ferritin, vitamin , B12 and folate to be tested. Low stomach acid is common in hypothyroid patients and can lead to deficient/low vitamins and minerals. Symptoms include musculoskeletal pain, fatigue and low mood, similar to hypothyroid symptoms.
I've no complaints about my GP's treatment 4 years ago, when TSH, FT4, FT3 and antibodies were tested. Bloods were euthyroid so I had no treatment, but she referred me to an excellent surgeon re a large nodule which turned out to be malignant. I'd been recovering on T3 post thyroidectomy but became unwell on Levothyroxine (T4). I'm probably in a minority of patients who pestered for dose to be reduced. I didn't get the support I needed from my endocrinologist, he was insistent that Levothyroxine couldn't make me ill and suggested a number of non-thyroidal illnesses which were investigated and discounted. I self-medicated T4+T3 without improvement, and only when I stopped meds for a few weeks to clear a build up of T4, was I able to recover on T4+T3 combination. TSH and FT4 were monitored for a few weeks by a new GP. TSH wasn't suppressed so FT3 wasn't tested. Endo agreed to prescribe T3 in addition to T4 at our next consultation. The hospital lab only tests FT3 when TSH is suppressed.
Good morning. My experience re: hypothyroidism and related issues is that your average GP has a little knowledge about lots of health topics. The endocrinologist I paid to see privately felt I was depressed because I was waiting for open heart surgery and could not compete at running anymore. He offered me anti depressants despite him acknowledging my hypothyroidism (I refused). Open heart surgery was a doddle compared with my on going hypo symptoms. My advice is read and research everything. I now self medicate and pay for private blood tests. I'm a retired health care professional and worry about the people who find it difficult to take full responsibility for their own health. The NHS is fantastic but breaking down under the strain. My own parents instilled in me the belief that doctors and policemen deserve god like status, so my instinct has been to accept my GPs advice. Not anymore.........!
My experience with a succession of GPs has not been good. I too have Levo and TSH & T4 tests and this is how it has been for c 15 years. GPs refuse to refer me because 'there is nothing a specialist can do that I can't' even though my results go up and down and my does of Levo is regularly changed without achieving stable test results. I do now take iodine, despite warning on the bottle and my GP's disapporoval because it seems to help, though that could be a placebo effect, and I worry in case it is doing long-term harm.
Like you, I'd really like to hear other people's success stories and know how we can follow the same path.
My GP is very sympathetic but loves to pass the buck and get someone else to decide for her. I have had very severe food intolerances (salicylates/ amines/ histamines/ dairy/gluten etc.!) which resulted in bad asthma and other symptoms. I can not get any input from dieticians on the national health service as I'm "too complicated" and my reading on the internet led me to ask for thyroid tests. My results for TSH is up from 2.68 in March to 5.91 in July (with going back on gluten for three days before the test) and down to 4.34 with negative antibodies by August (gluten free). T4 is in the low normal range. The GP decided to consult the endocrinologist whose line is not to treat until I reach 10 or show a clear progression towards 10 with symptoms so I'm going back on gluten for as long as I can bear (probably about a week!) and getting a more comprehensive private test done and keeping a detailed list of my very real symptoms such as muscle pain, severe fatigue, falling asleep after eating, memory gaps, horrid horrid depression, crying at everything etc. The point is I shouldn't need to make myself worse so that the blood tests reach a magic number (which according to what I read is a very high threshold indeed) to convince someone who has not even met me! And it would be good if the GPs would listen to the patient who can be the expert on their own condition. Anyone else had any experience getting treatment in Scotland?
I had appallingly disappointing treatment from my (old) GP, who admitted that she didn't know enough about Hashimoto's. I didn't expect her to be a specialist, but I did then expect her to research the correct treatment, and to find out the best way forward.
I also didn't expect to be fobbed off when I continued to be unwell, to be given incorrect information, and to be made to feel like it was all in my head.
If you have Hashimotos causing you low thyroid, then you need to investigate the problem with your immune system..food sensitivities, allergies to foods, viruses, bacteria, parasites, leaky gut etc.. No, Endo's and GP's are pill pushers and nothing much else. You would have to see a Functional or Integrative medicine doctor for that.
The whole system doesn't practise evidence-based medicine, that's my conclusion. I am sure it does in some areas - but it's not general.
I went to my GP in the 1980s, for example, complaining of extreme exhaustion. She looked at my conjunctiva and said my iron levels were fine. No blood test. In fact the conjunctiva test is only evidence based for excluding advanced anemia. It doesn't rule out mild anemia, let alone iron depletion short of anemia. Drs at every level are still using the conjunctiva test across the NHS.
Childbirth was the time when I really realised how bad the science was - but I won't go into the use of the scissors here. (!) I completely lost faith, as you have done.
Went to the GP 2011 saying I believed I was hypo (I self diagnosed after seeing myself on a video - suddenly realised how slow my speech and movements had become, and how bloated my face and body, and thought about my other symptoms.) She did not palpate my neck. I later self found (this is really hard to do) a nodule. Blood tests showed very high cholesterold and a lowered GFR, both associated with hypo as you know. She told me I was not hypo because my TSH result was 3.2 and then 2.5. When I privately tested my antibodies they were present and at a level where I would have been diagnosed before TSH fever set in.
Went to a different GP 2015 having taken the precaution of a full private thyroid blood test beforehand. Diag. Borderline hypo. Funny coincidence, that I'd predicted hypo by four years huh? Latest blood tests, TSH over range, hypo confirmed, indeed, Hashi's.
Like Clutter, I don't blame the GPs. They have to follow the rules. They were both polite and sympathetic. They don't have time to read and think about blood tests, they only have time to look at the ones the machines have flagged up. They don't have time to keep up with research even on life-threatening conditions. If they tried to think out of the box on every patient they'd go mad.
Though I do blame the GPs who are rude and bullying, and there are plenty of those incidents reported here.
I conclude: we have to educate ourselves, self diagnose, self test to confirm diagnosis, self test to check, learn to read and interpret results, look for patterns, look for non harming treatments or low risk treatments, monitor them - Clutter's approach above is exemplary, as usual.
And I also conclude: we are now told to challenge doctors on the ward as to whether they have washed their hands. I think it is equally important to challenge doctors over the evidence base for their assertions.
I sadly have to agree with your statement, Aspama “we have to educate ourselves, self diagnose, self test to confirm diagnosis, self test to check, learn to read and interpret results, look for patterns, look for non harming treatments or low risk treatments, monitor them” ... how awful that we even have to do that when we feel so ill and probably not in the best place to do any of it
So many of us on this site know this now. What is so sad is that so many people have such great belief in their doctors (I was certainly one of them), that they will do their best for us, and that they will help us get well one way or another. I worry about people who still believe this, and wouldn’t dream of challenging a doctor. I really worry about older members of my family.
I accept that their hands might be tied by guidelines, or their lack of knowledge – but what happened to the “continuing professional development” that other working people have to have (surely really important in medicine??), and at least talking to us like adults?
I agree. Some CPD on the thyroid would be helpful for many GPs. But the problems with research on the thyroid seem to be really deep seated. I am not sure that they are even looking for the answers to: why does hypothyroidism develop? Why is it associated so strongly with certain other diseases? Is it true that young people with thyroid autoantibodies have "no symptoms"? What happens to them as they grow older? Do changes in the antibodies come before changes in the thyroid, or is it the other way round?
If research doesn't exist yet on the extent of iodine deficiency across the UK population, really one can only conclude that they're not interested in looking for causes. Let alone solutions.
Thanks to all that have commented and shared their experiences!
I hope my original post didn't come off as too rude or "anti GP". I've just always been completely submissive and 'nod, agree and listen' when it comes to medical advice, plus I think it's amplified being of the younger generation (19).
I went back recently to follow Clutter's advice, and I got the feeling that while the Doctor was happy I was looking into my own condition so thoroughly, he was looking to put my research and the advice of you forum users down. For example I mentioned perhaps if increasing my Levo dose to 125 didn't see a reduction of symptoms that I should maybe measure my T3, to which he scoffed at the idea telling me "regardless of what you've read it won't show you a lot".
Still really struggling with confronting medical professionals, but its something I'm going to have to be ready to do!
Just been to the GP with my results from blue horizon, which were Biochemistry
CRP 0.40 <3.0 mg/L
Ferritin 65.7 20 - 150 ug/L
Thyroid Function
Free T4 13.58 12 - 22 pmol/L
Free T3 4.85 3.1 - 6.8 pmol/L
TSH H 7.89 0.27 - 4.20 IU/L
T4 Total 87.0 64.5 - 142.0 nmol/L
Immunology
Anti-Thyroidperoxidase abs 9.4 <34 kIU/L
Anti-Thyroglobulin Abs 15.3 <115 kU/L
Vitamins
Vitamin B12 L 146 Deficient <140 pmol/L
Serum Folate 31.06 10.4 - 42.4 nmol/L
Insufficient 140 - 250
Consider reducing dose >725
Can't stop crying as she was really really insistent on sticking to the number guidelines and as far as she is concerned the thyroid function is normal and B12 is within range. She has agreed to a referral to a gastrologist and to retest the B12 to see if it is low on their range. But I felt really really upset and started crying on her so she made some noises about seeing if she could give me advice on reducing my stress levels even though the main stress is feeling ill!!!!
Thanks I have done a new post (results from blue horizon) but I also put it here so that anyone who has followed this would see it. The GP wants to test me again to see where my B12 is on their range and check for intrinsic factor which may explain the low level in comparison to the ferrate and follic acid. She may treat if it lower than 120 on their range but considers that my current result is not that unusual and does not need treatment except improvement in diet (which I can't do due to food intolerance which I was hoping thyroid treatment would help with!!!). Also a referal to a gastro which will take 3 months or so. Sorry I'm still upset which is actually a symptom!
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