Summer 2021 I was diagnosed with Graves’ disease treated with carbimazole for around 6 months. Then took no medication for around 6 months, then was treated for hypothyroidism. Now I’ve been told I’ve returned hyper again.
It’s been nearly 2 years, I’ve not been on a permanent dose. How can I go from hyper, hypo to hyper. Off medication twice. I feel awful and appalled with the treatment from my Gp’s & endocrinologist. I’ve been refused a second opinion!
How does going private work? Do you need to inform your GP? What happens during first appointment private? Will I lose my NHS endocrinologist? Is one private appointment enough? Does the private Endo communicate with NHS?
Any information would be appreciated. I’m at my wits end now.
Thanks!
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Florah
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Here's one i did earlier See Florah's previous post:
"previous' history to make it easier for people to see what is going on, otherwise you will have to keep explaining :
June 2021...You have an episode of 'hyper' but we saw no proof it was actually Graves, as you have no TRab antibody results(as far as we know )
TPOab >1000 .
fT3 11.3 ( 3.1-6.8)
TSH <0.02 (0.3-5.0)
fT4 24.4 (12.0-22.0)
"I was seeing a consultant regular for TED and there was no concerns so were discharged"
Carbimazole for 6 months .... then nothing for a few months .
June 2022 .... had become hypo.
TSH- 9.88
Free T3- 3.7
Free T4- 13.9
Prescribed 100mcg Levo.
31/8/22. (when taking 100mcg)
TSH- <0.02
Free T3- 6.6
Free T4- 26.4
Now taking 50mcg of Levothyroxine reduced from 100mcg" (after above results) .
"I had a blood test 2/11/22," are these the result from 2/11/22 ?
Free T3- 7.2 (3.1 - 6.8 )
Free T4- 26.2 (12-22.0)
TSH- 0.05 (0.30-5.00)
currently take 50mcg of Levothyroxine.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
These results on 50mcg Levo are basically very similar to the previous ones when you were taking 100mcg Levo .
the TSH has come up a little and is no longer completely supressed , and this does fit with the lowered dose of Levo.
However , the actual thyroid hormone levels T4 / T3 have not come down at all , in fact the fT3 appears to have gone a little bit higher .
I would expect your Levo dose to be lowered further to 25mcg , or possibly stopped altogether based on these latest results, as you clearly don't need any 'extra' T4 at the moment , you seem to have more than enough...., and the fT3 is bit high at 110% .
It would be really useful if the GP would get endo to test TRab (Graves) antibodies , or confirm if it has already been done . (It may have been done and found to be positive , but you haven't seen it , this may explain why they referred you to monitor for TED)"
Hidden with medication. I was told by consultant to stop all medication 2 days ago. Will be tested again 6/2 and will see her 17/2. I’m exhausted with hypo symptoms & working full time! 😨
I hear you, go carefully, eat proper food and sleep as much as you can if practical. Are all your vitamins in range? We often have low B12, D, ferritin, folate which makes you feel rubbish too. I discovered that carbs at lunchtime made me super sleepy all afternoon, so protein, avo, olive oil etc and veg or salad, no bread really helped during the worst of it. Speaking of which I planned to be asleep hour ago 🫣 night 🌱
Have you had your thyroid antibodies tested? It sounds a bit like Hashimoto’s which can present like Graves, or was Graves confirmed by antibodies? (I’ve heard it’s even possible to have both)
At your age my thyroid was all over the place, up and down, particularly between having 2 babies, could lose or gain half a stone in a week. Sore throat and migraine headache and I’d drop a dress size over night. Followed by months of exhaustion.
Honestly probably worth pursuing NHS endo (thinking cost and expensive Endo lottery unless you get an amazing recommendation) but with a slight mindset/attitude focus to put yourself first and be more demanding, of being super vigilant, emailing the Endo secretary everytime your symptoms change. Getting tested more often for TSH T3 and T4 etc (privately if needed costs £26) that’s what I would do … just my sleepy musings, it might not be your thing. 🌱
yep dead simple, finger stab, fill a little vial, send it off in the post. Google monitor my health or Medichecks both do a discount with thyroiduk10 👍
Hi Florah .. i take it they have now told you to stop Levo completely ?
This is the only possible course of action (for the moment) given your latest few result on lowered doses of Levo. (Well that, or reduce it to 25mcg )
Some people have very unstable thyroid function unfortunately , and this is what is happening to you . it is the thyroid disease causing fluctuation in your levels , rather than anything being wrong with the treatment you have been given.
it is possible for these people to swing around from hyper to hypo and back again , and this does not necessarily mean their treatment is being handled badly, it is just how their thyroid is behaving .
All the Doctors can do in this situation is play 'catch up' and treat each phase of hyper / hypo as it happens using Levo when you go hypo .. and antithyroid drugs when you go hyper, until it hopefully settles down to being one way or the other. (or until you decide to force the end result by having "definitive treatment" (ie. thyroid surgically removed or destroyed by radioactive iodine ablation) if you get sick of waiting for it to go into remission or stabilise ~ definitive treatment obviously means you being hypothyroid and needing to be on Levo for life ... but if it doesn't settle down, you may find that preferable to the insecurity of continually swinging between the two)
You need to be aware that with your current over range fT4 and fT3 levels on Levo , even a private endo would have had to make exactly the same decision ...to stop your levo for now ( or reduce to 25mcg) .... and continue to monitor you for where it goes next . before deciding how to treat you going forwards.
Unfortunately , your thyroid is in the driving seat here , not your doctors , no matter how much you pay to see them .
Did you get any confirmation of a previous positive result for Graves antibodies (TRab) ? .. if you do go private , this is one of the first things you should ask to be tested .
Edited to add **
Without actually seeing a positive TRab result anywhere in your records, it is possible that that you do just have Hashimoto's, and not Graves.
Even though the endo previously wrote "Graves/ Thyrotoxicity" and told you you had "positive antibodies" it is possible they only tested TPOab and just made an assumption it was Graves due to high T4/T3 levels at that time and the fact that TPOab are often present in Graves .
It may just be Hashimoto's because your T4/T3 levels at the start were not as high as you might expect for Graves. fT3 11.3 and fT4 24.4 are over range , but Graves often has T4 and T3 levels 3 or 4 times higher than the top of the range. And Hashimoto's does sometimes have periods of high T4/T3 levels ~ particularly in the early stages (when the thyroid is attacked, it can dump a load of ready made T4/T3 into the blood all at once) .
Do you now have confirmation of what you have been diagnosed with :
For Graves we need a TR ab - thyroid Receptor Blocking antibody -reading and range or it might be worded as a Thyroid Stimulating antibody reading and range :
For Hashimoto's we did have a high TPO reading at the very beginning of your thyroid journey some 6 months ago :
I did list then, I think, reference books for you to dip into for both Graves and Hashimoto's as these are both auto immune diseases and as for the cause it is one of your immune system malfunctioning and rather than safe guarding your body - your immune system has turned on your body and started to attack it.
Both Graves and Hashimoto's attack the thyroid and eyes and initially both start off in a similar way but Hashimoto's is not treated with Carbimazole and why it is essential to test for which antibodies were over range and positive 6 months ago.
This rollercoaster of symptoms has played havoc with your body and metabolism and looking back I see you have very low core strength vitamins and minerals and you need to get your ferritin, folate, B12 and vitamin D monitored and supplemented where necessary as these low levels will be compounding your health issues further.
I don't have answers, but observations. If so many had thyroid issues and these replacement drugs were the answer, then this page and a couple more similar sites wouldn't be filled with people with long suffering symptoms! I bought into the myth oh you just have to get the correct dose! As me personally I don't believe I ever had a problem, but I sure did have symptoms after naively starting on Levo. and staying on it for just under 5 years ! That is why I am a strong advocate for learning the etiology of your symptoms! With all the over the counter drugs , food additives, and stuff used in our ADL's . I have no problem understanding why people's bodies are like test tubes at high tide! When did you first not feel well and what were your symptoms? What is your food intake like then and now? What fluids do you drink and are you dehydrated? What are your bowel movements like and how regular. What is your urine like colour, ? oder /smell, how often. Do an inventory of your intake and out put and your physical appearance. Skin color and tone, ect. Did you know soy is harmful to our thyroid glands. allegedly fermented soy is less harmful. Visit a site gutsygirl.com good information on all things soy! In short my opinion is if Levo and the like were the answer we wouldn't have so many people in distress. God Bless Us One And All !
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See Florah's previous post:
Fed up, worried and just plain fed up!
well and truly fed up :(
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