I have posted previously about weird symptoms since all the thyroid business began.
I’m currently waiting for a total Thyroidectomy which feels like my option for fertility and safe pregnancy as I was warned against ATD and flat out don’t want RAI! So surgery was considered best option, albeit very drastic.
I have a big concern however that I was never tested for the thyroid antibodies at all, only ever TSH/T4/T3 and been on a reducing dose of Carbimazole since I was found to be overactive (TSH 0.05)
I’m apparently in ‘Range’ now clinically but I’ve never ever felt great as my levels fluctuate every couple of months for no obvious reason.
I’m going to speak with the Endo tomorrow as I was under the impression that it is the Antibodies that cause such problems with fertility and pregnancy rather than the thyroid itself, if in range. But I’m concerned i have been misdiagnosed?
It’s a desperate situation to be just waiting to even start a family nearly 2 years on... My biggest concern is making a mistake with radical surgery but I don’t want to take risks using ATD in pregnancy and things to flare up again.
I’d really appreciate any thoughts or advice. I worry it will be waved away tomorrow when speaking to consultant. I was previously told that antibodies don’t need testing if I’m having a Thyroidectomy anyway... ?
Many thanks
Ally
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Ally1234567
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It can be difficult to get pregnant and maintain pregnancy on levothyroxine too
Don’t believe endocrinologists who say managing subsequent hypothyroidism is easy.....
Yes essential to see if you have high TSI or Trab antibodies...we see many Hashimoto’s patients misdiagnosed as Graves’ disease
Either way, they are both autoimmune, removing the thyroid doesn’t remove the disease.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with both Graves and Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
With both Hashimoto’s and Graves strictly gluten free diet frequently helps or is essential
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Well its playing on your mind so I can't see why, at your meeting tomorrow, you just ask the consultant that you would like a copy of the antibody test for your records.
He only needs to look at the papers, or the screen, and simply copy/ print off the original antibody test for Graves Disease.
It's either there, or it isn't : it is quite simple :
Though I totally understand it's much easier for me to write this than for you to say it to someone deemed to know now than you and considered in a position of power.
It's a simply question and has a simply answer, and am sure if the roles were reversed he would like all his medical information, as is his legal right, and as it is yours.
You’re right, a blood test will surely tell me everything, it’s a real shame they didn’t see the importance of doing it ever and I naively accepted that.
I wasn’t really sure if the antibodies would be dormant now but I will ask the Endo tomorrow.
As I understand things, Graves waxes and wanes, throughout one's life.
It's when the disease attacks the thyroid that you'll " know all about it " because of the fact that the thyroid is such a major, crucial gland and the body's engine,
Imagine running a car without an functioning engine ?
A thyroid going haywire is serious business as it's instrumental in regulating your whole body, and yes, it is also considered to be life threatening if medication isn't sought and the AT drugs prescribed to block your over production of thyroid hormones during this first critical phase.
Your antibodies would have been high and over range at the time of diagnosis :
When you first went to the doctor s/he would have taken blood : the results will not have been normal and will have flagged up to the laboratory to run further, more extensive tests, like a T3 and T4 and run the antibodies in order to offer a diagnosis of a medical condition, and the medical evidence on which to base medication and treatment.
This is, I believe, the normal procedure :
To be honest I only learnt of all of this after becoming very ill 8 years after RAI thyroid ablation for Graves and coming on this amazing forum, and starting my learning curve and my recovery back to better health by Doing It for Myself.
It's too late for me, and I think I did and do have Graves, as everything I've suffered since RAI is detailed in Elaine Moore's first book though the NHS seem not to know these facts and my doctor referred to me as a conundrum.
You must be true to yourself ?
What is the worst thing that can happen ?
You ask a question and you get an answer - which is either a yes or no, and there is the evidence, on the original blood test result which has to be available in your paper file if there is such a thing any more, or in/on the computer.
You are not being difficult or confrontational but simply asking a question which is all part of the reason for appointments. It's a two way discussion and a chance to resolve any questions you may now have so that you can have confidence in that you have made the right decision, and currently you have a doubt, which is easily sorted by a piece of paper.
I would ask Elaine Moore what she thinks because she does have a lot of knowledge about Graves' I am not looking to start a family as I am 60 but I have no intention of having my thyroid removed unless it becomes cancerous because I have seen how many women struggle to get the right treatment afterwards.
I copied this comment of yours from your earlier post :
It seems I started with a TSH of 0.05 but normal T3 and T4, underactive for a while and slowly climbed into normal, back into slightly low T3 on my last bloods.. I did query this with Endo but advice was to continue with the 5 mg of Carbimazole.
If your T3 and T4 were "normal " then I would doubt you have ever had Graves Disease. Your TSH below range is not particularly low. I've seen results being quoted of TSH < 0.001. And people with Graves have Free T3 and Free T4 which are usually extremely high, they are not "normal".
In any form of thyroid disease the results which make the most difference to how well someone feels are the Free T3 (most important) and for some people (but not all) Free T4 is important too. I've never seen a patient saying that their well-being relied on TSH and not their Free T3 and Free T4. TSH is a pituitary hormone not a thyroid hormone.
If you have episodes of being underactive and episodes of being "overactive" it sounds like you have a classic case of Hashimoto's Thyroiditis, rather than Graves' Disease. And the end result of having Hashimoto's Thyroiditis is that your thyroid will get gradually destroyed and you become permanently hypothyroid. Surgery is rarely required in any case of Hashi's.
In your shoes I wouldn't want either a thyroidectomy or RAI. Controlling hypothyroidism following thyroidectomy or RAI can be much harder than controlling it in cases of hypothyroidism which develop "naturally".
If you never feel great then I suggest that you might have other issues rather than thyroid issues - but what they are is difficult to say in the absence of any data.
1) Cortisol being high or low is common, affects levels of TSH and thyroid hormones and makes people feel awful.
2) Thyroid disease of any kind can affect nutrient levels. And low nutrients make people feel terrible as well. Unfortunately, doctors think any result for nutrients in the reference range is fine and dandy, when in reality there are optimal levels that make most people feel better.
3) The fact that you've never been told about your thyroid antibodies being tested makes me deeply suspicious that you are dealing with a completely incompetent endocrinologist.
You need more information before anyone comes at you with a scalpel or wants you to take a radioactive drink.
As well as the Elaine Moore website you should also take a look at the following websites :
Thank you all SO much for taking the time to reply. It’s lovely to know there is a caring community that understand and I always receive such informative and constructive advice.. thank you
I don’t know if this is of any help but my blood results on diagnosis (18 months ago) were:
TSH <0.05
T3 = 6.1
T4 = 26.7
Since I began the Carbimazole, the T4 has always been in range (slid up and down a tad) but it has stayed between 12-22.
T3 has pretty much been between 3.7 and 4.7
But the TSH has fluctuated from ‘normal’ to ‘abnormal’ at each blood test... ranging from 2.6 - 6.6, increasing and decreasing like a Yo yo
I find it so difficult to decipher how the numbers relate to each other but I know they’ve really fluctuated.
I definitely remember the Endo saying he wasn’t interested in checking antibodies as it was irrelevant for the Thyroidectomy so I don’t think I was ever tested.
I think I will request an antibody test to rule out Graves and Hashimotos as it just feels like I can’t have an organ chopped out without knowing it’s the only option for pregnancy.
I definitely remember the Endo saying he wasn’t interested in checking antibodies as it was irrelevant for the Thyroidectomy so I don’t think I was ever tested.
The man sounds completely incompetent. It sounds as if he thinks the thyroid is irrelevant to normal life. Every single cell in the human body needs T3!
But the TSH has fluctuated from ‘normal’ to ‘abnormal’ at each blood test... ranging from 2.6 - 6.6, increasing and decreasing like a Yo yo
Graves' antibodies don't disappear. Hashi's antibodies would disappear if you had a thyroidectomy, or if your thyroid was destroyed by Hashi's.
I agree that your T4 (I'm assuming it is Free T4) was higher than most ranges, but really only by a small amount. We've had people on the forum with Graves' who've had a Free T4 level of 70+. Free T3 with rampant Graves' can be 30+. This is why we are all so dubious about your endo saying you have Graves' when he hasn't actually tested your antibodies. You really need to know, and keeping you ignorant is dreadful medicine.
I can understand that having high levels of T4 and/or T3 is very unpleasant but it would be a good idea to check out info on dealing with the hyper phase of Hashi's to see if you can reduce your thyroid activity with dietary changes or improving nutrient levels or taking some supplements or checking your cortisol is okay. But you would need to do some research on the subject. The Izabella Wentz link I gave you is a good starting point, and the Elaine Moore site is worth poking around in even if you don't have Graves'.
If you decide in the end that you want to stick with anti-thyroid drugs (ATD) then that's fine. Some people take them for years.
Has your endo led you to believe that you have no choice but to have a thyroidectomy or take RAI? If you have cancer or enormous nodules that restrict your swallowing or breathing then that is different, and your only choice might be a thyroidectomy. Or if you have a huge goitre affecting breathing or swallowing and starting to grow under your rib cage.
But if you don't have any specific reasons for having a thyroidectomy other than your endo has told you that you should then he's seriously misleading you.
People can't be taken off anti-thyroid drugs if they refuse a thyroidectomy or RAI. If you prefer to take ATD then it might piss off your endo, but he can't refuse to prescribe for you.
That sounds more like Hashimotos (aka autoimmune thyroid disease) as those results are hardly out of range and could even have been caused by taking a B vitamin supplement that included biotin in the week before the blood test. For Graves you'd expect FT3 in double figures. I wouldn't have a thyroidectomy without knowing that it really was Graves, as Hashis will gradually destroy the thyroid anyway
I've just seen these results and if this was your first blood test on which Graves was diagnosed I do not think, from the little I know these T3 and T4 levels are high enough to be Graves Disease.
There is another autoimmune disease - Hashimoto's - and it initially presents in the same way as Graves but is not treated with Carbimazole as the " hyper " phase is transient and the levels come down by themselves.
With Graves the hyper phase is permanent and the levels only reduced by AT medication:
With Hashimoto's you can have several episodes of " hyper " as this disease attacks the thyroid intermittently sending your T3 and T4 haywire and giving your symptoms.
The more attacks on the thyroid, the more disabled the gland becomes and ultimately you will need thyroid hormone replacement to replace your own thyroids erratic, reduced production.
Reading through the posts I missed earlier it does sound like you maybe dealing with Hashimoto's rather than Graves, but again, antibodies need to be tested.
If your consultant is still the same person who dismissed running the antibody test - I'm sorry : and ask for a second opinion.
Hi there, I suggest you do your own testing via Medichecks or Blue Horizon for antibodies. My Endo originally said I had Graves, but private testing clearly showed Hashimotos. I displayed hyper symptoms but am actually under active. I wouldn’t do anything drastic without full testing and a second opinion. Keep posting to let us know how things go!
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