Hey guys, I'm new to this site and this is my first post!
I was diagnosed with an underactive thyroid two years ago when I was 18, and was later diagnosed with uterine fibroids at 20. I have always had problems with my periods right from the very beginning when I was 11, but it never occurred to me that it wasn't 'normal'. I was wondering if there was a link between the two conditions as they are both hormone related? And anyone in a similar situation?
Also anyone who has fibroids, how have you been managing it? I was scheduled in for an appointment with a gynaecologist this week which got cancelled because of covid.
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mdox
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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, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I saw that article but wasn't sure if it was actually that common!
I was diagnosed aearly December 2019 and have been on 25mg of levothyroxine since...I still have some of the symptoms but my blood tests always come back within the normal range so my GP has kept me on the same dose. I usually get the sodium brand (not sure if that is the name of the brand).
When I was diagnosed, my vitamin D was severely deficient, ferritin was also severely deficient and my folate was pretty low. I take vitamin D supplements and iron pills now.
Also, is hashimotos different to an underachieve thyroid? I've always thought people used the two terms interchangeably but I'm not really sure. My GP has never mentioned hashimotos to me.
Thank you so much for sending that message - so many useful stuff in there. It's interesting because all my blood tests that I've had to check my thyroid haven't been in the morning and its always after I've taken the dose for that day and had some food to eat.
25 mcg is a teeny-tiny dose - it's more usual to start at 50 mcg unless very old and frail ... and to increase every 6 - 8 weeks until you are on the "right" dose for you ...
Please get your actual historic blood results - then you can see what has been tested (probably only TSH and if you're lucky free T4) and where in range you are. As SlowDragon says, this isn't enough. You are legally entitled to your blood results. You don't need to give a reason, though it's usually easiest to say "for my records" or to register for on-line access.
You don't want to settle for "fine" or "normal" or "in range" - you are aiming for "optimal". For example, the lab range for free T4 might be 12 - 22. If your result is 12.5 you will feel rubbish. If it's 19.5 you will feel much better - but both are "in range" ... As a generalisation, you want TSH low in range (or even below range once on thyroid meds); free T4 and free T3 high in range (top third or more); vit D in 3 figures and other key nutrients at least half-way through range.
Thank you for the reply! I did find it quite worrying that they never increased my dose from 25mg which is the lowest dose. They only check my TSH levels, I last had it checked November 28th 2020 and my serum TSH level was 1.18mIU/L, normal range is 0.27-4.2.
I had no idea that T4 and all those other things should also be tested, but I'll definitely speak to my GP about it. I have so many other symptoms and a lot of gut issues and I'm now wondering if it's all related to my thyroid being under medicated
Go for it! I've had some success with my GP in getting the full testing Slowdragon talks about by saying that these are the tests recommended by Thyroid UK.
The antibodies test will tell you if you have Hashimotos (ie if this come back over-range) - the biggest single cause of hypothyroidism, If so, be aware that many people with Hashis find it helpful to go gluten-free (even if not coeliac) - and some find going dairy-free helpful too.
Poor nutrients and hypothyroidism go together unfortunately, and your levo works best when these are good - but the GP won't test them unless you ask
Wow! I'm really glad I joined this site today, so much knowledge and wisdom. I had no idea there was a full test for the thyroid, Its been a year and a month since my diagnosis and I have so much to learn.
I am definitely going to get the antibody test, might explain my stomach issues if it's linked to gluten sensitivity.
Thank you for the link, just read it and it's really interesting, I've tested negative for celiac disease but I think I'm going to try a gluten free diet at some point to see if symptoms improve.
I most definitely will! If my GP declines those tests then I'll look into getting them done privately. Thank you again for all the advice
It’s absolutely essential to get all FOUR vitamins optimal
Especially ferritin
Important to retest all four vitamins at least annually
Vitamin D twice year
And absolutely essential to test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Recommend you ask for retesting.....or test privately
Just had a look at my blood test results from December 2019 (when I first diagnosed).
For my thyroid:
TSH = 13.5 (normal range 0.27 - 4.2)
FT4 = 9.6 (normal range 12 - 22)
I've had a few other tests since then to check if my thyroid was stable, but they've only been checking my TSH levels which come back in the normal range.
Vitamin D:
21nmol/L 'severely deficient' (normal range 50 - 125) - December 2020
63nmol/L (normal range) - December 2020
Vitamin B12 was 325ng/l (normal range 187 - 883) - July 2020
Folate was 2.9 (normal range 3.1 - 20.5) - July 2020
My ferritin has always been pretty low because of my fibroids which causes me heavy and prolonged bleeding. I had it last checked a month ago and it's at 40.2ug/L (normal range is 15 - 150). It was initially 14ug/L at the beginning of last year and went up after I started taking supplements.
I was diagnosed with fibroids several years before being diagnosed with an underactive thyroid. The only treatment I had for the fibroids was to have a mirena coil fitted due to heavy frequent bleeding.
Didn’t like the idea at the start, but guidelines then were that you were advised to try a coil before being referred to hospital. But after the initial discomfort I only had spotting for a few months and then nothing for 5years, so would recommend.
That's really good, I'm glad it's working for you. They've suggested I get the coil but said the want the gynaecologist to see me first, I think they also want to check for endo
Obviously heavy periods make it extremely hard to improve low iron and ferritin
Heavy periods are classic sign of being hypothyroid and will almost always lead to low iron and ferritin
Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Similar to you I was diagnosed with hypothyroidism and later found I had fibroids. I have always had problems with my weight and periods. When I was younger I was suspected with PCOS but this was confirmed a few years ago.
Some think oestrogen dominance leads to fibroids and hypothyroidism or hypothyroidism like symptoms. However, there has not been many studies on it but we do know oestrogen has a affect on thyroid cells.
I feel like almost everyone with hypothyroidism and other hormonal issues suffer from weight gain issues, but for me it was quite the opposite and it's really odd. I've been underweight for since I was 16 (21 now) and have a low BMI. My under-active thyroid was diagnosed quite late I think because I never knew the symptoms to look out for, and the doctors just randomly tested it one day after I complained about tummy issues!
I was also suspected of PCOS (blood tests revealed high levels of testosterone) but scans didn't show any cysts so the doctors just ignored it. But that article is really interesting, thank you. Do you follow any specific diet by the way?
Thats interesting! I was similar in that we thought I had a tummy issue but it turned out it was hypothyroidism. Also when i was your age ( I am around 10 older than you lol) I was not diagnosed with PCOS as they could also not see cyst. I had no other ‘typical’ symptoms. I went to the doctor due to left side pain. So it was also left as no one seemed too sure. A few years ago I went to a private gynaecologist who confirmed it.
In terms of diet I know it sounds typical but cutting out on processed foods has helped. As well as limiting dairy and when I do have it I have full fat e.g. one tablespoon of greek yoghurt a few times a week. In terms of carbs and gluten I limit where I can but its not easy!
I also think seed cycling has helped reduce my PMS.
I would try making small changes first and see how you go...eventually they become habits😊
I also have really bad left sided abdo pain! It never occurred to me that this could be related to my ovaries/PCOS, every time I google it they suggest it's diverticulitis so I wasn't sure. My gyno appointment was supposed to be for this week but it got cancelled unfortunately, but I'll make sure I talk to them about that.
Is it possible to relief PCOS symptoms with birth control? Because I've been taking that and it's not helped with the left sided pain
Oh wow I have never come across someone with the same issues as me not sure if that is good or bad🤣 yes my gyno confirmed it was cysts in left ovaries causing that pain and they do coincide with PMS so definitely bring it up😊
Birth control did help somewhat but I decided to stop it as I felt it just masks the problem not solves it.
I also saw a nutritionist that recommended the dim supplement with calcium gluconate. I took it for 6 months - a year I am not sure it did anything but may be worth a try. It is meant to help metabolise excess estrogen.
I think it is alot of trial and error . I track how I am feeling to try and spot any patterns . The one thing I noticed was the months I seed cycled I got no PMS or spotting and my cycle length was longer and so far this month no side pain!
It really is difficult as we are all individuals and hormones are so easily affected by things. I’ve also not seen much online about the side
Ahaha it's definitely a good thing, makes me feel slightly more normal and reassures me I'm not dying😂 I most definitely will do. I will probably ask for a different scan this time (I had an ultrasound last time so maybe that was less accurate at identifying the cysts).
Why did the nutritionist recommend calcium gluconate? Also haven't heard of seed cycling until now! That sounds really promising, I will look into it thank you.
Haha yes its nice to not feel so alone😀. Yes it wasn’t until i had the intra vaginal one that they were certain of the cyst. Apparently the calcium also reduces estrogen you can find it combined with DIM.
I hope it works for you! Either way seeds are good for us!
I was initially supposed to have the intra vaginal one and I chickened out, I regret that now haha. That's really interesting, I'll definitely try those and update on here how everything goes once I have more tests and try out different things.
Thanks so much for the advice/sharing your knowledge on this!
Sorry I also forgot to mention that with the ferritin not sure what doctor has advised you.
One thing I found helped was when my levels were good I carried on taking one tablet of ferrous fumarate a day . Studies show doing this a as prophylactic is safe in preventing anaemia in menstruating women.
Someone else mentioned about levels below 50 causing hair fail. My doctor did advise me that women who still get periods should make sure ferritin never goes below 50.
Hi I'm so sorry to hear about your situation it must be awful going through it. I've been going through mine for 2 years with relentless appointments with the hospital gynaecologist at the maternity ward in Aberdeen
But like you because of covid I can't see a radiologist about my Embolization so I have to continue with the injection for further 6 months until I get the Embolization.
Like you I also would like to know how other people are coping with it.
Hey, thanks so much. It is awful isn't it! Has your gynaecologist recommended embolisation? Also how many fibroids do you have and how big are they if you don't mind me asking? I've had a consultation with a gynae recently but she didn't recommend surgery or anything, just said to try different pills or the coil.
Also how have you found the injection? Sorry it's been so difficult, it's really annoying we've started having these problems right in the middle of a global pandemic, just makes it even more difficult to sort anything out.
Just read your post on your page - my goodness, I am so sorry you had to go through that! That sounds so terrifying, I'm not sure how you've coped honestly but I am so happy they were able to help you. I didn't realise myomecmtomy was that risky. I also have Subserosal Fibroids, is it the ovaries that give them blood supply?
Hi Just read your posts. My gynaecologist recommended Embolization a while a go because of my severe symptoms. Because of covid I can't get the appointment with a radiologist so it has been put on hold hence the extension of the injection.
I don't know how many I have inside of me as I have clusters of them all over my abdomen in different sizes.
They were actually sticking out of me again before I got my injection. Which was very alarming for me as I felt that fear again due to what I experienced in the I.C.U. Ever since then I have developed a fear of the hospital. But I try to hide that fear and try to carry on.
My mum does tell me I'm like my Nana "a tough cookie."
I have had an under active thyroid for years then at 34 I got fibroids. I have never heard of a link between the 2 in my life. Especially not from my doctor. If you still have doubts speak to your GP to put your mind at rest. Don't believe everything you read online people will say anything but it does not mean it is true.
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