I am still waiting for my blood test kit to arrive and letter from Endo...
I have post few times about this matter sorry for the repetitive issues. But I am feeling very down and tired right now. So the fatigue has gotten worse and stay at that level for these past two to three weeks. I have energy in the morning but then I will be dead tired by late afternoon like 5. On the weekends, I mostly rest and do a bit of chores, I haven't been able to do my favourite activity ,hiking, since I will be to exhausted by then. I have been feeling on and off palpitations ( more of a my chest feels weird), my knees feels a bit numb but I can walk fine, my eyes are more sensitive and my body feels warm.
I am just wondering if it is my Graves or not, since I have not have this symptoms since last September when I started 5 mg Carbimazole daily.
My last blood test in April:
TSH 2.6 miU/L ( 0.27-4.2)
T4 18.7 pool/L
My Endo did blood tests for the fatigue last May but I can't get the result.
All I know is that it seems in the range, although my cortisol is in the lower range but the SST test ( done at 11.05 am) comes back normal.
0 M: 239 mol/L
30M 578 nmol/L
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Just having results 'in-range' doesn't mean that everything is good. This is a mistake that too many doctors make. You don't give a range for the FT4, but it looks high in-range. However, your TSH is also high - in-range, but too high to be euthyroid, it is suggesting that your thyroid is struggling. Or it could be that although your FT4 is high, your FT3 is low. But, as they haven't tested that, we can't know. Or, it could be that there is a pituitary problem - TSH is a pituitary hormone, not a thyroid hormone.
As for the SST test, doctors don't seem to understand what they're testing for, there. Having low cortisol but the SST test comes back normal doesn't mean that everything is good. It mean that there's nothing wrong with the adrenals themselves. It's just that they're not getting the stimulation they need to make adequate amounts of hormone. So, we're back to the pituitary again. The pituitary makes ATCH, which stimulates the adrenals. Did they actually test the ATCH itself?
So, depending on what the results are of your blood test kit, when you finally get it, it may be the pituitary that needs further testing.
How's your ferritin? Low iron will make you very tired.
I just noticed I did not give any range for the FT4. I managed to get my full blood test result back in May. Honestly it all looks in range, the only red flag I found is the cortisol level (8.45 am) 195nmol/L ( below 350nmol/L suggest adrenal insufficiency). My ferritin 48 ug/L (15-150 ug/L)
I will post the full result in a new post soon, I have been feeling worse these days.
Yes, but as I said before, just being 'in-range' is not necessarily a good thing.
And your low cortisol may 'suggest' adrenal insufficiency, but I talked about that above. It's looking very like a pituitary problem, not an adrenal/thyroid problem.
Be interesting to see what your next set of results are like.
I agree with you, but seems doctors don't really care when you are in-range even though you have symptoms.
They also test my ACTH when I did the SST test ( though they didn't put the blood directly on ice as I recall someone mentioning about it)
ACTH 19 ngL (7.2 - 63.3 ng/L)
I don't think they are interested in doing any more tests since my results were within range. Also, annoyingly they keep ( at least 2 GPs I met) pointing out my blood pressure is good.
Well that ACTH may be 'in-range' but it's too low. Your pituitary is not functioning 100%. But, the doctors you've seen either don't care - which is very unprofessional - or they are too ignorant to understand.
I am at the end of my wits tbh, I feel like they are going to blame it on stress or anxiety. Even though, I wasn't feeling or under a lot of stress or anxiety. Now I am a bit stressed out since I haven't felt like myself and good for more than a month. Plus I can hardly concentrate on my master thesis.
Tomorrow I am going to try to call the Endo secretary to ask for follow up appointment, which was supposed to be in July I think since my last follow-up was in April.
They probably will try and blame your low cortisol on that, yes. Any excuse not to dig deeper or treat. But, I see by your blood test results below that you have Hashi's, so that can't be blamed on stress. And if you have anxiety, that is probably caused by the Hashi's, rather than the other way around.
If I were you, I would start another thread asking people if they can recommend an endo that knows about the pituitary - they do exist because there are quite a few people on here that managed to get diagnosed with pituitary problems because they just managed to find the right endo. Your common or garden, bog-standard NHS endo it unlikely to know anything about it. You need someone with a special interest.
The Endo sent me a letter about the test results including the SST weeks ago.
"I am pleased that her cortisol, adrenal androgens and thyroid levels are satisfactory"
I believe that they aren't going to do anything about it. I am suspecting that I might be going towards hypothyroid as it did happened last time but I am a bit skeptical since at that time I think I was in higher dose of Carbimazole. Though it end up me having the block and replace treatment strategy which works well.
I mentioned to my Endo during our first meeting about that part of the history but they brush it off. Thank you very much grey goose for listening to my rants and giving advice !
No, they just can't be bothered because they know they're totally out of their depth. They just don't understand any of it. But don't give up. You just need to find the right endo. I'm pretty sure s/he is out there somewhere.
Have you found your original blood test results and ranges prior to the AT medication and which antibodies were found over range and positive and the medical evidence of your diagnosis and treatment plan for Graves Disease ?
Ok - so it looks as though you have Graves Disease and Hashimoto's running in tandem.
Both are thyroid auto Immune diseases and Graves treatment takes precedent as Graves is considered " life threatening " if not medicated.
As I understand things you were first diagnosed in 2018 and treated with anti thyroid drugs and at some point in time, said to have ' found remission ' were drug free and then relapsed towards the end of last year ?
There is no cure for Graves, nor Hashimoto's - but with Hashimoto's once your thyroid becomes disabled this AI disease dies with the gland, whereas Graves can continue to upset and attack other areas of your body.
The main issue is one of your immune system attacking your body and why ?
Mainstream medical have no answers as to why your immune system has been triggered to attack to your body - and all the anti thyroid drug does is " buy time " by blocking your T3 and T4 levels rising any further and causing more symptoms.
Slowly your T3 and T4 levels fall down back into range and your symptoms relieved and the AT medication stopped, and the hope is that this is ' just a blip ' and you can return to normal, drug free, and get on with your life.
There are 2 main Graves antibodies and you can have either a TSI ( Thyroid Stimulating Immunoglobulin ) antibody and or a TRab (Thyroid Receptor blocking) antibody reading :
At any one time either a blocking or stimulating antibody takes control of your thyroid and drives up or blocks your T3 and / or T4 thyroid levels - and at some point in time these 2 extremes in actions and symptoms will burn out / off set each other and you can experience phases of feeling relatively well or you.
The anti thyroid drug simply tries to block the effect of these antibodies by stopping your T3 and T4 rising any higher and causing more side effects.
Balancing thyroid levels while Graves antibodies are raging is a constant, near impossible challenge as nothing is static.
Titration up and down with the AT drugs is a art and takes great skill and blood tests and antibodies are not monitored that closely after diagnosis.
Some endo's totally suppress your T3 and T4 with a large dose of AT medication and add back in a measured dose of T4 so not to let your T3 and T4 fall too far through the ranges and into hypothyroidism - the other end of spectrum and just as, if not, more debilitating.
The most current research is suggesting that the longer the patient is on the AT medication the lower the relapse rate in Graves Disease patients :
This has to be logical best treatment option as after all we are looking at an AI disease and a issue within your immune system response for which there is no medicl solution and time maybe the one thing that needs to be given for the immune system to calm down and readjust to whatever has happened.
Graves is a poorly understood and badly treated AI disease and I found the most interesting of websites to be that of Elaine Moore, especially the sections on more holistic and alternative treatment options and on looking at oneself and how did you get here and finding ways of healing oneself.
There is likely a genetic predisposition with someone in your family maybe a generation away from you with a thyroid health issue.
Graves can also happen because of a sudden shock to the system like being involved in a car accident or the unexpected death of a loved one, or just ' out of the blue. '.
Stress and anxiety are common triggers and the need to learn to relax and find things to do that you enjoy, looking more at what you really want to be doing and possibly be reconsidering your life / work balance.
Considering being referred to a Thyroid Eye Disease specialist unit - tedct.org
and please whatever lotions, potions, drops or gels you use - these must all be Preservative Free -
P.S. I've a feeling I've said most of this before so apologise if I have - you will be exhausted and do not expect too much from your body and don't over stretch yourself - when metabolism isn't running as it should yo will have trouble extracting core strength, essential nutrients from your food and you risk your vitamins and minerals nosediving through the ranges, so run a ferritin, folate, B12 and vitamin D and lets try and shore up your body as best as we can to support you through this difficult phase.
Some of the symptoms started in late 2017, but I was diagnosed in January/February. It was by pure luck I think, the doctor I was seeing for few times due to recurrent infections notice my neck to be a bit swollen. I was euthyroid for more than a year, no symptoms at all and feeling my best.
Just curious, how do you concluded about the Grave's and Hashimoto's running in tandem?
Thank you very much for your support ! I am really grateful ❤️.
I had the ultrasound scan, I didn't remember specifically about goitre, but following check up in late 2018 by another doctor ( I was in different country doing internship) he only commented he definitely can see increased activity or update in my thyroid.
I am wondering if my eyes sensitivity is related to this. It seems that the swollen eyelid is only affecting my left eye and it went away by itself after short period of time ( though it also did come back).
Your blood tests above do not show a T3 reading and T3 is the most important, vital active hormone which runs all or bodily functions.
It's a guess - but think it's quite likely that you are exhausted in all sorts of ways because your TRab antibodies are now in blocking mode and likely distorting / blocking your conversion of T4 into T3 and your T3 not high enough to help relieve your symptoms :
It's simply not acceptable when with Graves and being treated with AT medication that the T3 and T4 are not run together - I don't understood your endocrinologists actions ?
Ok - so if I was looking at this blood test result without knowing anything else about you I would write that :
A TSH over 3 used to be considered as hypothyroid and T4 - Levothyroxine was prescribed. The rules changed to read that a TSH must reach 5 before medication can be prescribed and now the goal posts have changed to 10 - but if you have positive and over range thyroid antibodies your doctor may consider treatment sooner than this ridiculous double digit number.
Look at the T3 and T4 ranges and it pretty much starts off as a sliding conversion scale at a 1/4 ratio T3 / T4 :
So if we divide your T4 by your T3 your current conversion ratio is around 4.7 and wide of centre.
If we look at this in percentage terms your T4 is at 65 % but your T3 at just 22 % - and not high enough in it's range to run your body and you will be suffering with symptoms of hypothyroidism.
We generally feel at our best when our T4 is up at least 80% through it's range ( at least say 20 ) as this should in theory see a T3 reading in the mid 5's and at least around a 55% through it's range.
So - for you, it might make sense to ask to go back on a Block and Replace regime where you continue to take the AT drug but add back in T4 which hopefully converts to a higher level of T3 for you to be able to function better:
Or if your antibodies are low, non existent another suggestion maybe is to try to come off the AT medication again in the hope that your Graves has burnt itself out.
You will likely be left hypothyroid as the Hashimoto's may have also damaged your thyroid and need the support of thyroid hormone replacement. initially in the form of T4 Levothyroxine.
Non optimal ferritin, folate, B12 and vitamin D can compromise conversion of T4 into T3 as can inflammation, antibodies, any physiological stress ( emotional or physical ) dieting, depression and ageing.
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sorry for the repetitive issues. But I am feeling very down and tired right now. So the fatigue has gotten worse and stay at that level for these past two to three weeks. I have energy in the morning but then I will be dead tired by late afternoon like 5. On the weekends, I mostly rest and do a bit of chores, I haven't been able to do my favourite activity ,hiking, since I will be to exhausted by then. I have been feeling on and off palpitations ( more of a my chest feels weird), my knees feels a bit numb but I can walk fine, my eyes are more sensitive and my body feels warm.
Endo says I am just not taking T4 correctly!?
I upped my medication. Now I'm exhausted!
Am I overmedicated? Advice sought please
am i just fat & unfit (embarrising female problem )
Am I on the right track?
