Just interested if anyone has had a similar experience and what did they do to cope.
I was diagnosed with Graves Disease around April 2021. It was found early on I couldn't tolerate Carbimazole very well; the endo reducing my dose gradually until I simply couldn't tolerate it anymore. By September 2022 it appeared my thyroid had levelled off. Everything has been quiet until last December when I started to feel very "wobbly", legs feeling very weak. Also started with intermittent tremors in my hands, among other symptoms.
A recent TFT indicated hyperthyroidism & my GP simply said "best thing to do is see an endocrinologist "
Current wait times are anywhere between 28 & 33 weeks.
To say I'm feeling "off colour" is an understatement. Definitely affecting quality of life.Has anyone else faced a significant wait and if so how did you deal with it?
Thanks in advance
Written by
SnowQueenOne
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As for my GP she couldn't "get rid" of me quickly enough. She even had to ask me to give a bit of a history and background behind the blood tests. Which is a concern!
Vitamins are fine, though they weren't tested for in these recent bloods, just TFT.
Before covid times wait times could vary but before 2 months were typically & the GP could consult with specialist early on and start carbimazole & propranolol. Alternativels are PTU (anti thyroid) or bisoprolol (beta blocker). PTU is 2nd option if carbimazole not well tolerated.
Your care has been quite poor by sound of it.
First step obtain your blood test results to see what’s the situation with your levels.
Is TSH low or FT4 & FT3 levels high. Has everything been tested because often GPs do not complete a full test.
Was Graves confirmed with positive TSI or TRab anti bodies.
Untreated Graves is unsafe. If your FT4 & FT3 are shown to be high go back to GP & request to be started on treatment.
We are hearing of very extended wait times. Ive be referred back to endocrinology & has been 4 months with no indication of how long. I am stable but I have to push GP for continued monitoring. As they would be happy for me to wait entirely on endo.
Hi So yes Graves was confirmed by TRab by the endo.It's the aftercare from the GP that is lacking. Trying to get access to my full medical records and that is proving an issue, but that's another story!
When my bloods first indicated something was amiss in 2021 the then Associate (couldn't see a GP) who did a full bloods request rang a local endo who said urgent referral was needed. Had to go private as no appointments were available.
Most recent tests were minimal TSH, T3 and T4, I think.
It is seemingly more and more likely I need to try and go private again.
Recommend you complete a full blood test privately if necessary before booking a consult with private doctor. Including thyroid function & key nutrients - folate,ferritin, B12 & vitamin D
If you go to your profile page you can reread you previous advice which has links to companies.
Thyroid UK has compiled a list of private GPs & Endocrinologists. You can obtained by contacting Thyroid U.K. either by emailing info@thyroiduk.org or using this online form thyroiduk.org/about-thyroid...
I had to wait three months to see an endo but my surgery and my hospital seemed to operate some sort of shared care system. My GP rang me to say I had a very overactive thyroid with antibodies and said she had left a prescription for carb at reception and she had made an endo apoo8ntment for me and to c9me back for bloods after four weeks. So I started on 20mg carbimazole, unfortunately I couldn’t be given propranolol because I have asthma so I just had to sit it out and wait for the carb to kick in.
I had the blood test after four weeks of taking carb then got a letter from my endo who I still hadn’t seen, telling me my results hadn’t changed enough and to get more carb from my GP and take 40mg a day. So 40 a day it was and no further blood tests until the week before my appointment and by the time I got there I was extremely hypo!
My hospital treats with block and replace so when I saw the endo I started on levothyroxine which is the replace part of the treatment. I was told my treatment was the ‘fast ’ way and would last a year. I didn’t think a year was very fast however I was discharged with my thyroid back in a good place exactly a year later.
I started doing my own Medichecks thyroid bloods back then because I found it impossible to get my vitamin D3 tested and they were talking about radio active iodine should I not go into remission when I hadn’t ever had my T3 checked either.
I agree with the others, I think your doctor should try you with PTU, it isn’t just for pregnant ladies. Could you find written evidence that PTU can be used for anyone who doesn’t get on with carbinazole and either send it to her or take that along to show her? You can’t just hang around without treatment until you eventually get to see an endo.
Can you kindly share these new TFT - results and ranges -
and I think we are still waiting on confirmation of a Graves Disease antibody reading along with your original blood test results at diagnosis to include a TSH, Free T3 and Free T4 ?
If the with Graves Disease - which is considered life threatening if not medicated - your doctor could, after consulting with the hospital endo department, restart you on PTU as detailed on a previous reply to you.
Both AT drugs Carbimazole and Propylthiouracil( PTU ) have side effects but if your thyroid hormones, keep rising, as is common with Graves, we do need to try and semi bock the T3 and T4 from rising high and higher - which is why the AT Drug is prescribed - to semi block your own new daily thyroid hormone production and to offset the worst of the symptoms being tolerated.
All the AT drug medication does is put you into a holding position - much like a plane waiting for a landing slot - so we play for time - while we wait for your immune system response to calm down and hopefully your thyroid hormones stay back down in range without the need for any drugs.
The most recent research we have if with Graves Disease states that the longer the patient stays on the AT medication the better the longer term outlook for the patient;
I'll have to try and find the results from 2021 and confirmation letter to my GP from the Endocrinologist confirming graves disease.Should be able to find recent TFT results.
But as mentioned I did not tolerate Carbimazole at all. Made me feel so ill and sluggish.
Have also been prescribed beta blockers too in the past and experienced the same.
I'm going to try and see the Endocrinologist who confirmed graves and if I can get an appointment try and get a full blood test too. Though believe me it's much harder than it needs to be!
I totally understand and why many of of us on this forum now arrange Private own blood tests - details of which can be found on the Thyroid Uk - website - who are the charity who support this forum - thyroiduk.org - as previously detailed.
Forum members then post the results and ranges back up on the forum so we are better prepared with questions and facts to ask when we eventually get an appointment with a specialist in the field of endocrinology.
Yes, I remember your not tolerating the Carbimazole and surprised the alternative PTU wasn't offered as Graves needs AT drug medication for the reasons previously explained and the doctor is leaving himself wide open for a medical complaint ?
The Graves antibody reading will likely be separate from your first bloods at diagnosis as it can take a couple of days to process and generally looks and reads as a TSH Thyroid Receptor - blocking or stimulating -
look for TRab or TSI - and <> numbers - other thyroid antibodies might also be present looking it TgAB or TPO :
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