I was diagnosed with Grave's disease in 2013, after treating with Carbimazole for six months my thyroid stabilised and I was weaned off and remained stable.
I have now been getting symptoms of hypothyroidism (my endocrinologist did warn me that I could swing back the other way). My blood tests have been showing signs of sub-clinical hypothyroidism (elevated TSH, lowered T4), but they have been yoyo-ing back and forth between abnormal and normal ranges and my doctor is refusing to do anything about it all the time that they are only in the sub-clinical category. I requested a print out of my doctor paperwork and it lists it as "a-symptomatic" sub-clinical hypothyroidism, despite complaining repeatedly about lack of energy, issues sleeping, migraines and heart palpitations.
Has anyone else had any similar experiences with their thyroid condition and have any advice?
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dizzyarmadillo
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Graves was diagnosed by GP (after about five years and every blood test going) through TSH, T3 and T4 blood tests. Confirmed by endocrinologist, also had a radioactive iodine uptake test and thyroid scan. I'm not sure about the TSI test. The endocrinologist mentioned that even though it stabilised after Carbimazole, it could turn into Hypothyroidism (there are a couple of case studies online with people having swung the other way from what I've found).
The "normal" ranges I was given were TSH 0.3 - 4.8 and FT4 7.7 - 20.6. My TSH has been sitting round 5.5 for most of this year, except for my one "normal" reading which was 4.65. My FT4 has been at the low end of "normal" - around 9, I wasn't given a FT4 reading with my "normal" TSH result.
There's nothing 'normal' about a TSH of over 4. It may be within the range, but it's the range that is wrong. A truly 'normal' (euthyroid) TSH us around 1, never over 2 and you are hypo when it reaches 3. But, the NHS, in all it's wisdom, requires the TSH to go over 10 before they will diagnose! They believe that it is impossible to have hypo symptoms until the TSH goes over 10. Whereas, in the real world, people can have quite bad symptoms when their TSH reaches 2 - although it's not the TSH itself that causes symptoms, it's low T3.
The problem with believing anything and endo says - or any other doctor, come to that - is that they don't all know the difference between Graves' and Hashi's. Very often, a doctor will believe that someone with a low TSH just has to have Graves' and they don't even bother to test the antibodies. Do you have the report from the scan?
It's something I've been fighting about for a while, but I think I've felt so awful for so long it's just the new normal for me and it's difficult to pinpoint anything. I am due another blood test, so I will push for FT3 as well this time.
Yes I have the report from the scan, which showed no nodules, no cold spots and increased uptake of 6.1% which apparently was consistent with Graves with no focal nodule. At the time of seeing the endo my TSH was 0.02, with FT3 of 11.6 and FT4 of 31.1. I did locate a hospital letter that stated I had been referred for blood tests for further TSH and antibody testing, but I cannot find any paperwork detailing the results of that test. All of my later hospital letter refer to autoimmune Graves disease, so I assume it was done and came back positive, but I'll have to look into trying to find a copy of the results.
Never assume anything where doctors are concerned.
Your TSH was low, but that doesn't mean much. But, your Frees weren't that high. To me, that looks more like Hashi's results, on a Hashi's 'hyper' swing, than full-blown Graves'.
So it turns out my antibody test was done in 2019 (five years after being declared euthyroid). It tested TPO only, with normal range being less than 9 and mine tested 506.7 !
High TPO antibodies normally indicates Hashi's, not Graves'. To diagnose Graves' they should have tested TRAB or TSI antibodies. So, it rather looks like you got a false diagnosis.
How ridiculous, so I probably never needed to take the Carbimazole (which might explain why I was only on a low dosage for a couple of months).
All my endocrinologist paperwork states autoimmune Graves, but I've had a look at my medical records with my GP and they all state thyrotoxicosis and hypothyroidism. I am now thoroughly confused about my life and situation 😤
It's not only rediculous, it should be criminal! But, as I said before, so many endos don't know the difference between Hashi's and Graves' and just go by knee-jerk reactions to prescribe carbimazole when they see a low TSH. Endos really aren't the best people to treat thyroid, they are mainly diabetes specialist with a few peculiar ideas about thyroid. So, looks like your GP was right and your endo was wrong.
Oddly it was my GP who diagnosed hyperthyroidism and started the Carbimazole. I distinctly remember it as I went in to get the results of my blood tests and he looked and them, me and then laughed and said "you don't have the typical sign of hyperthyroidism, normally people are skinny!" which as a 21 year old who had been struggling with weight issues for years, it kind of stung. The endocrinologist just "confirmed" the GPs diagnosis.
OK, I see. That was a very unprofessional remark to make! But, doctors are not know for their tact. However, it does go to show the mind-set of the majority of doctors, who divide symptoms into rigid hyper/hypo lists. When, in reality, the symptoms are pretty much the same for both. Both hypos and hypers can put on weight when their thyroid levels are out of range. And, both hypos and hypers can lose weight.
So, anyway, they were both wrong. You have Hashi's, not Graves', and now you are hypo. So, it's time your stupid GP made good his mistake and put you on thyroid hormone replacement without further ado!
Thanks greygoose! It's nice to get some advice and opinions from people who have gone through similar things - there's no history of it in my family, so none of them really know how to help me.
Essentially yes I believe that is what is happening, they don't seem particularly bothered. It doesn't help that everytime I go back to GP I get a different doctor and have to start from scratch again.
The "normal" ranges I was given were TSH 0.3 - 4.8 and FT4 7.7 - 20.6. My TSH has been sitting round 5.5 for most of this year, except for my one "normal" reading which was 4.65. My FT4 has been at the low end of "normal" - around 9, I wasn't given a FT4 reading with my "normal" TSH result. So I think you're right in that they don't think my results are bad enough to be treated. I had almost managed to convince to start treating me anyway when I got the "normal" result and they essentially just patted me on the head and sent me away again 🙄
I don't remember having antibody tests or getting any results from such a test. I definitely had a also had a radioactive iodine uptake test and thyroid scan with the endocrinologist which confirmed Graves.
Your FT4: 9 pmol/l (Range 7.7 - 20.6) makes it 10.08% of range, most feel well with higher levels.
It’s like saying a “normal” shoe size for your age is 4 - 8 - here’s a size 4 - off you go. Not ideal if your a size 7.
Do you arrange blood draws as recommended on forum? If the test was afternoon, this lowers the daily TSH. Best to book for early as possible. Most doctors don’t account for it. Fasting overnight - drinking water only can also show a higher TSH. It might be a slight difference - but it might be difference between being in range & just out of lab range.
Do you take biotin supplements? This can also interfere with test & skew results best to leave off 3 days before draw. Longer for high doses of biotin.
An uptake scan is usually quite conclusive and the patterns for each condition is quite distinct. The uptake level it usually accurately calculated. If highly concentrated it indicates Graves, like a range a % above a certain limit indicates Graves - but was it a 15% high or 50% high. Both are above range but one would indicate a mild severity over a strong one.
What dose level of carbimazole controlled your FT4 & FT3 levels (not TSH level)
So it’s even possible you have both Hashis & Graves antibodies. Signs of autoimmune damage may have been visible on scan, by a non diffuse pattern which is why doctors suggested you may become hypothyroid later on.
Doctors rarely mention this possibility. Many people have hyper in early stages of Hashimoto’s but are treated as having Graves and not warned otherwise.
It's difficult to say how well I feel, I think I've just adjusted to feeling generally a bit rubbish.
I hadn't seen that before - I'll definitely have to try and get early morning appointments in the future. I don't take any supplements, so nothing to interfere from that side.
The report from the scan showed no nodules, no cold spots and increased uptake of 6.1% which apparently was consistent with Graves with no focal nodule. At the time of seeing the endo my TSH was 0.02, with FT3 of 11.6 and FT4 of 31.1 and I was started with 15mg Carbimazole by my doctor, which almost immediately had by blood results showing sub-clinical hypo-thryroidism, and was dropped to 10mg. I was then eventually weaned off, by taking 5mg a day, then 5mg every other day, then 5mg every three days before stopping entirely.
I did locate a hospital letter that stated I had been referred for blood tests for further TSH and antibody testing, but I cannot find any paperwork detailing the results of that test.
Many start on 40mg + and can stay on a moderate doses for several years.
I’m quite “suspicious” of such a low, short term dose. I have a hot nodule which causes continuous hyper at a lower level than typical graves. It took 2 months of 20mg to lower levels and been on various doses ever since. Got a low as 5mg / 10mg weekends but currently on 10mg.
Your levels may have been natural lower anyway but it doctors were going by TSH the medication might have not be necessary at all.
Getting your records will be interesting. Seeing what antibodies were & which ones were tested. The scan report might also shed some more light on things.
Maybe I never did have Graves them, maybe as greygoose suggested I might have had a hyper swing on hypo.. 🤔 In fact, despite all my endocrinologist documentation saying autoimmune Ggraves, my health records with my GP list thyrotoxicosis and hypothyroidism... I am somewhat confused!
It also turns out my antibody test was done in 2019 (five years after being declared euthyroid). It tested TPO only, with normal range being less than 9 and mine tested 506.7
they just react to severe hypo / signs of hyper. They don’t investigate cause throughly. I have contradictions on my notes too. Even when I say I take an “Anti” thyroid for “over” active thyroid paperwork comes back “hypothyroid”
TPO Doesn’t confirm Graves, they decided that diagnosis based on function.
Graves is generally continuous hyper type symptoms and considered life threatening if not medicated with an anti thyroid medication like Carbimazole, which simply ' buys you time ' for your immune system to calm down again.
Hashimoto's is generally transient hyper / hypo symptoms and not medicated with an AT drug as the T3 and T4 do not rise higher higher as in Graves, but drop back down into range themselves and longer term the patient become hypothyroid and T4 - Levothyroxine is prescribed.
Both Graves and Hashimoto's start off the same way and the only way to tell them apart is by knowing which antibodies were over range and positive from the original blood test which is the medical proof of diagnosis.
Graves it is generally treated within the hospital in an O/P department for around 15-18 months with Carbimazole in the hope the immune system calms down and this is ' just a blip ' and longer term the talk is of having RAI thyroid ablation or a thyroidectomy.
These are both considered thyroid auto immune diseases and the thyroid is the victim and not the cause - as the cause is one of your immune system having been upset and triggered to attack your body.
You seem to have been treated for Graves but what happened after the RAI uptake did you say ' no ' to the treatment with radioactive iodine ?
It will be in your best interest to get access to your medical records and look back and see exactly which auto immune disease you actually have.
I'm with Graves post RAI thyroid ablation 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI amongst other things and primary hypothyroidism and self medicating.
I was never offered further treatment. I was treated with Carbimazole for six months, weaned off and then declared euthyroid with no further treatment needed. It was mentioned that if Carbimazole didn't control it, then I would possibly need further treatment but it never came to that.
I am in the process of trying to access my full medical records and see if the antibody test was ever actually done.
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