Hey I was recently diagnosed with polycystic ovary syndrome last month and was told my thyroid levels are bit high and fluctuates so my Anti Thyroid peroxidase Ab is up at a 60 and gonna develop more thyroid problems in the future, the reason I am writing this is because my hormones have been really bad since at a very young age, with severely heavy periods,cramping,extra body hair on face,chest,back and stomach, acne on my back and face and I have been feeling sick quite alot. I fainted in February this year from dehydration and low potassium and ever since my body has not been the same ever since, I was vomiting having head spins constant after leaving the hospital this went on for almost 2 weeks I had lost so much weight from it, after like 2 weeks the dizziness came back with bad heart palpitations that went all day and night for a week straight I was vomiting quite alot had blood tests, ecg scans twice. They couldnt find anything the doctor put me on deralin 40 a medication that patients would take after a heart attack it did calm my heart but still had weird feelings in my head. After taking them for a little bit I began to experience chest and rib pain and my jaw began to ache it would go numb and stiff for a couple of weeks had a scan on my face to see whats going on nothing showed up. The feeling began to fade while I was at my partners but another problem came I would keep getting light headed and shortness of breaths that would last for hours this went on for over a week it would hurt to breathe or bend over my chest would ache, went to the doctors twice in a different town they assumed it was anxiety without taking proper tests on me, the shortness of breath faded only for a week then it came back for around 3 weeks it was so hard to breathe it was so hard to even talk or do the tiniest tasks without trying to catch my breath, couldn't even cry it was a struggle. By this time I stopped taking the heart medication to see if it helps which didnt do anything btw. I went to a different doctor which I am glad that happened this doctor actually listened to me told me that anxiety was the last thing to assume. She asked if I had family history for bad periods and thyriod problems which I did my grandma had both. She said it most likely would be Pcos and thyroid problems, so she gave me a blood test to check everything, a breathing test and a urine, a couple days later the results came in she was correct I had pcos and one of the levels for my thyroids was high and I gotta monitor them every 3 years because she said I most likely will develop more thyroid problems in the future. I asked so with my breathing could it be the pcos and thyroids she said it could be what is triggering it due to my hormones are going insane and what could be the reason why I have been sick for so long. She put me on the contraceptive pill called BRENDA-35 ED I have been taking it for over a month now but I have been developing bad cramps still even just moving the tiniest bit it would just trigger it my breathing has been playing up a little bit again still getting lightheaded but I am slowly getting better after a long time I am still struggling to gain back my weight I just want to feel normal again my depression and anxiety just gets so much worse I never been so upset all the time without wanting to cry constantly.
Just seeing if anyone had a similar situation with thyroid problems and pcos. I just don't know how to deal with it at times it gets too much.
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Jessielouise22
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Sounds like you already have lots of hypothyroid symptoms
High percentage of patients with PCOS also have autoimmune thyroid disease (Hashimoto’s)
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
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, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
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, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I added my blood results into my post, they checked my iron the normal rating was a 10 mine was a 9. The doctor pointed it out to me also I did have an ultrasound on my thyroids apparently it came back looking normal thats why she said to monitor every 3 years.
Cause I will most likely develop even more problems due to hypothyroidism. I had bloods down when I was younger and my tsh levels was up to an 8 instead of being in between 1 to 4. This was when I was 15 - 16 had really bad heart palpitations and tremors along with severe periods to the point I can't stand. One of the doctors pointed those levels out to me showing concerned but then another doctor just ignored it assuming I was ''sick'' on that day. Which I wasn't.
My grandma had her thryiods removed cause her thyriods were massive and she was struggling to breathe due to it.
I am her only granddaughter so I basically develop her conditions.
i would think she might test every 3 months, not years.
Members will comment if you get hold of the results of all the tests she took (get a printout from reception)
I ve had a few thoughts whilst reading your post, but I think it better that more experienced members comment, cos I'm sure they 'll know more than some of the Drs you ve seen.
Could be you have Hashis and graves and maybe swing, you will need to do thyroid tests much more often if this is the case and an endocrinologist who understands Thyroid , not just a diabetic one, you will need a specialist who only deals Thyroid ,adrenals & pituitary so you need to be referred to one of them and take all previos thyroid results and show them..
I see they have done B12 but you haven't piut other results up, It might be worth asking them to check Parteital cell antibody and Instinct factor antibody for Pernicious Aneamia as if you have one autoimmune many others are likely to follow also an MMA test as well as activee b12, but I am afraid all B12 and Pernicious Anaemia is not 100% reliable.. PA can come out like it is another condition its quite hard to get it diagnosed, try looking at the pernicious aneamia society web page and see if you have any of the symptoms as I said PA can pretend and look like many other conditions...
I also see they have tested ANA was that positive
another really important Vitamin is Vit D this has to be top of range don't listen to the NHS ranges they are so they dont have to treat you, they are not optimol levels...
if you could let us see the other blood results maybe able to help you more .. hope this helps
You could also ask your GP for an early morning serum cortisol must be done no later than 9 am and they must send sample to the lab on ice and get your electrolytes tested re the cramping, sounds like potasium maybe off or it could be you need Magnesium both cause cramping
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