I initially discovered my thyroid was underactive after the birth of my son 4 years ago. I was treated with levothyroxine and thankfully all was well , symptoms subsided and I began feeling better.
I gave birth to my second baby in March , my gp was anticipating the thyroid would react the same which it did and I was running on empty with a 3 month old baby. Really distressing, new born exhaustion mixed with thyroid exhaustion! So they upped my doze to 100mg of levothyroxine , 4 weeks later I had my bloods done and it was extremely overactive. The highest in fact my doctor had ever seen. She rang me and asked to see me immediately, I was given beta blockers for the heart palpitations. My mood was all over the place, I couldn’t sleep, couldn’t stop cleaning and felt terrible anxiety. Gradually, the doze is being reduced - I’m not at 25mg and the gp is hoping this will stabilise it.
I’m concerned as my thyroid is reacting different from the first time- and jumping to overactive. I’ve began getting new symptoms , my eyes become sore every other day. I guessed it was my contacts but I got my optician to complete the lense check which was all fine. I’m worried there is something more !
I’m not familiar with Graves’ disease - my doctor mentioned it when I questioned could there be other reasons for the thyroid acting this way, he said we won’t worry about that yet.
I’m wondering is there classic symptoms? Is my story familiar to anyone else? I’m due back at work soon and I’m worried, I don’t feel ready .... I’ve never had a sick line in my life but I’m considering asking for some more time off- is this reasonable for me to ask? I would love some advice... I feel really isolated, that it’s just a case of get on with it and hopefully it will sort itself out!
Thank you
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Meggy222
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Sounds more like you have Hashimoto's Thyroiditis, than Grave's. Sadly, doctors do not understand the difference. But, you should ask your doctor to test TPO antibodies.
You should also ask for a print-out of your lab results, with ranges. You need to know exactly what you're dealing with, because your doctor doesn't sound very clued up. She should know that a thyroid cannot jump from hypo to hyper, it just doesn't work that way. However, if you have Hashi's antibodies, levels can jump around.
You could also be suffering from nutritional deficiencies - no matter how good your diet - so you should also ask her to test vit D, vit B12, folate and ferritin. Supplementing anything that is sub-optimal will make you feel much better.
Thank you grey goose I will ask my gp for a copy of my results. Is it possible that if I was overmedicated with the initial 100mg of levothryoxine that this would send me into hypo or not? if this isn't the case and the thyroid is jumping all around the place you seem pretty confident that this would be hashimotos.. and how exactly is this diagnosed ? What test do I need to ask for? Thank you for your advise , it's much appreciated!
You are only over medicated if your FT3 is over range. Do you have copies of your recent results with ranges ? The FT3 is rarely tested and is so important - penny pinching again ! Testing the two anti-bodies TPO & Tg are the two tests that will confirm Hashimotos.
If you were hypo, it is very unlikely that you would be over-medicated with 100 mcg. But, being over-medicated will not 'send' you anywhere, you'll still be hypo.
The thyroid itself cannot jump around all over the place, it is physically impossible. However, having Hashi's will mean that your immune system is attacking your thyroid in an attempt to destroy it. And, as the cells die, they release their store of hormone into the blood, causing levels to rise.
However, one cannot say that that is definitely what was happening without seeing the actual numbers and ranges, because doctors have no idea how to read blood test results, and often make mistakes. You really do need to get hold of your lab results.
As Marz said, diagnosis is made by testing antibodies. However, there is no cure for Hashi's, and the treatment is just the same as for any other form of hypothyroidism - thyroid hormone replacement (levo, etc.).
But, there are things you can do for yourself, like adopting a 100% gluten-free diet, and taking selenium, to try and reduce the antibodies and slow down the destruction of the gland.
Results look like. I’m hoping your experienced eyes can shed some light I think when she said T3 - nothing in August’ and October it may mean it wasn’t tested? Not sure 🤔
Yes, that's what she meant. If your FT3 was really zero, you wouldn't be walking round, telling the tale!
I forgot to mention, below, where I've commented on your results, that those high levels are only temporary. They will go back to being hypo in a short while.
Thank you Marz, I take it the anti-body testing isn't something GPs do unless asked? This will provide a clearer picture of what's happening ... thank you
For some strange reason Docs in the UK think anti-bodies/auto-immunity are of no consequence. We often read on the Forum that people only find out they have Hashimotos when they are tested after joining this forum - sometimes many years after the initial diagnosis. Sometimes members have been tested years before when diagnosed and they are positive but the GP has not informed them.
I think it is because mostly auto-immune issues are something we have to deal with ourselves as most GP's have little or no understanding.
The NHS seem to only test the TPO - so private testing would be the best way forward. Testing anti-bodies is expensive - so as we know the NHS is cutting back at the expense of the patients wellbeing.
I had hypothyroid diagnosed when my baby was 8 months old back in 1981. After 30 odd years of horrendous symptoms, I now know that I'm at my very best with my TSH at 0.05. I never saw FT3 tests and didn't know T3 existed. I only did the private tests for the two thyroid antibodies in January 2017, and low & behold they both came back as fairly high. So I had Hashimotos Thyroititis all those years without knowing. Which meant I had inflammation which I should have been working to get down. Also I did the private gene test (DIO2) in June 2017 and - low & behold, I've got a faulty thyroid gene which means I can't convert T4 into the usable thyroid hormone T3.
Hi marigold , I can't understand why doctors wouldn't suspect or at less investigate if there's a suspicion of hashimotos... I'm just trying to build my knowledge now as I feel this isn't going to be straight forward ! So you suffered all this years, that's hard.i will ask my Gp to test for the two antiobodies ... and if they are high its hashimotos? Thank you
Sadly Meggy222 the NHS only does one of the two thyroid antibody tests. I had to pay for them. I got the two by doing a Medichecks private thyroid test which included TSH, FT4, FT3, folate, ferritin, vitamin B12, vitamin D, and those 2 antibodies. medichecks.com/thyroid-func...
If you don't need all the others as you have had them recently, Medichecks may do the 2 antibody tests alone.... I haven't had time to check.
Even a Professor of Endocrinology in 2006 at a large teaching hospital (Birmingham) nearly killed me and didn't tell me I had Hashimotos.
I have absolutely no faith whatsoever, in doctors, endocrinologists, even Professors, in fact I despise them. They had long enough to make me well but did not. I did it myself. I haven't had time to read your profile and previous posts so not certain of your situation. x
I've had a quick look at medichecks and I see this option , I can't see the antibody tests on their own but this will cover me right? Should I get the vitamin etc testing done aswell?
'Our best-selling thyroid blood test examining levels of TSH, T4, FT4 and FT3 as well as thyroid antibodies for a comprehensive picture of thyroid health'
It's crazy that we are left to fend for ourselves , fumbling around looking for answers. I'm thankful that I signed up to this group, at least I'm headed in the right direction! With two young children I can't afford to be unwell, I just don't feel myself and haven't done for a long time. I want me back! So I'm keen to know, how are you feeling now? I'm hoping you feel good and there's light at the end of the tunnel
Take a look around Medichecks Thyroid Section tests. See what you need to test. If in doubt, do the one I send link for as it covers everything folk on here need to interpret your health. I think Medichecks do an offer on Thursdays?
Yes it's hellish bringing up children with this awful vile illness. I'm now 66 and my baby is 37. He suffered through his childhood due to me wanting to sleep all the time, not being fun, I think he had ADHD and wasn't able to control him properly. It's all just about worked out in the end as he's got his own business as an electrical contractor, has a beautiful 7 year old son and although he's getting divorced (never liked his wife ) he now has a fantastic girlfriend who is clever, wise, and has helped him a lot. But if I allow myself, I still get angry at the way both he and I were let down so incredibly by the Professionals. Please do ask more questions if you need to. I'm flying by the seat of my pants this morning.... doing about three things at once. I'm in the process of trying to update my profile but had technical problems and the admin here are sorting it. You could Follow me so you can read my new profile very soon, x
P S I'm the best I've ever been now.... think I had an underactive thyroid from childhood, exacerbated by septicaemia aged 25, then 4 miscarriages. My diet has changed everything since August 2017 x
It is good that you are still young and finding out about your health. I struggled with a family and poor health and was not diagnosed until 2005 when I was 59 - here in Crete. I had a demanding career in between various surgeries but no-one ever mentioned the Thyroid until moving here.
You can click onto my name above and read my edited Bio Only takes a couple of minutes. Am feeling so much better although there is a bit of hip pain today after taking a yoga class yesterday - its also raining !!
Yes there is light at the end of the tunnel as long as we keep up to date and reading loads ....
I'd take the advice of greygoose and Marz and Marigold as few doctors appear to know anything about hypothyroidism except look at the TSH result. Not much good if patient wants to recover. Also doctors don't know any clinical symptoms.
A dysfunction of the thyroid gland seems to be quite common amongst women who've given birth.
Hashimoto's is the commonest form of hypothyroidism, in that it is the antibodies in the blood which attack the thyroid gland, and they wax and wane until the person is hypothyroid. Treatment is exactly the same.
Going gluten-free can help reduce the antibodies and the attacks which, I believe, some have symptoms of being hypo.
As I said in my first response, we need the ranges. The results on their own are meaningless.
Having said that, I can see what happened here. Your TSH was very high in August, and your Frees look very low. Which was quite obviously hypo. And then, in November, your TSH is very low, and Frees look very high. So, your air-head doctor took a flying leap at the conclusion that you had 'gone hyper'!
No, no, and no again, that is not the way it works. And 100 mcg levo could not possibly have caused that enormous jump in results - plain common sense tells us that. It is just so obvious that you had a Hashi's 'hyper' flare - or swing, call it what you will. Which I explained above. Don't need the antibodies testing, it's all there in black and white. You do have Hashi's.
I was researching Hashimoto on nhs website and I came across this : postpartum thyroiditus
‘In postpartum thyroiditis, the immune system attacks the thyroid within around six months of giving birth, causing a temporary rise in thyroid hormone levels (thyrotoxicosis) and symptoms of an overactive thyroid gland.
Then, after a few weeks, the gland becomes depleted of thyroid hormone, leading to low thyroid hormone levels and symptoms of an underactive thyroid gland.’
Is it possible this could be a cause? The rise and fall sounds familiar ...
Except that you started out with hypo levels. I don't know, you'll just have to see how this pans out.
What happened between the birth of your first and the birth of your second? Were you on levo all that time? Did they test your thyroid when you first became pregnant with your second?
After the birth of my son , when they first discovered it was underactive, they began levothyroxine straight away. I stayed on 50mg right the way through until I fell pregnant again. This dosage was kept the same throughout my pregnancy. I was tested every 4/6 weeks after the initial diagnosis and the thyroid function was good - it never went into hyper at all like this time. I have been treated for hypo for 3 years ...
I would love to be a fly on the wall when you have your conversation with your GP about Hashimotos - now that you are well informed and he/she is not Do report back and let us know what happens - possibly in a new thread.
People here will guide and support you ....
Other required tests - B12 - Folate - Ferritin - VitD - all will be LOW due to the Hashimotos and need to be OPTIMAL for you to feel good and for thyroid hormones to work well Mentioned above by Marigold ....
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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) he now has a fantastic girlfriend who is clever, wise, and has helped him a lot. But if I allow myself, I still get angry at the way both he and I were let down so incredibly by the Professionals. Please do ask more questions if you need to. I'm flying by the seat of my pants this morning.... doing about three things at once. I'm in the process of trying to update my profile but had technical problems and the admin here are sorting it. You could Follow me so you can read my new profile very soon, x
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