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[Dizzy16]

Hi, I'm just wondering if anyone can help me understand if my hormones are normal please. I am 34 and for the last 3 years life has been a misery. I have been housebound for the last 2 years.
I have had different tests 3 x dutch and blood tests - estradiol is typically around 96 to 107pmol/l and I have no testosterone according to dutch tests it is at 0.48.
LH is 8.5 on last check (prior in 2019 was 2.1)
FSH is 7.9 (prior 2019 8.2)
Progesterone was non existent but according to dutch is now is normal (over the top of the range)
I have severe anxiety, agrophobia, brain fog, muscle weakness, fatigue, irratibility, over rumination, burning thighs, migraines, HR can go quite high, BP did go high for a while but normalising now (always been low prior), tingling lips, ear pressure and tingling at times, eye twitching, hair loss, dry skin, LS, waves of tingling all over before period to name a few, some things are not as bad but I'm not me anymore.
I can't drive, I can't walk far, I struggle to do very much.
After covid in November 2021 I developed sporadic urticuria, which is cyclical when estrogen dips? Also thrush - typically starts around cycle day 23 and also after ovulation then goes again and comes back.
GPS have been very unsupportive and have made my life a misery.
I believe there is a thyroid issue although levels have been normal - they have fluctuated hyper a few times as well since covid. Also my mum and sister have Graves and Hashis but my gps and private endos won't help 😒

In April 2023 at the end of my period I got the most horrific lightning shocks through my pelvis, anxiety, panic attacks (back to back for hours and hours). Drs wouldn't even give me propranolol.
I have been diagnosed bipolar but I don't believe it, the only thing they've gone on is mood fluctuations?? that they admit coincide with my cycle. So now I'm wondering if it's early meno/peri?
Cycles are typically regular 28-30 days except decemeber it lasted 13 days and was very watery, and I had thrush that month also.

Apologies for the long story - but either I'm going crazy or it is hormones, I have read so many forum posts and can relate to alot of them.

 

[Dizzy16]

Forgot to mention when all this started my balance was very off I was first diagnosed with labrynthitis (i think that's how it's spelt) but another Dr dismissed it due to the nature of my balance issues - it's like a spaced out feeling? And sometimes when I'm sat down it can feel like bed/chair is moving underneath me.

[CLKD]

Morning.  'they' don't seem to have much idea about peri menopause.  To diagnose bi-polar one has to be referred to a Psychiatrist. 

If your GP won't prescribe to ease your anxiety is there a Nurse Practitioner who may be more knowledgeable?  As for menopause symptoms, I suggest that U ask for a referral to a dedicated menopause clinic [not a gynae] ; there are waiting lists in the NHS and private sector.  If U feel better when the appt arrives U have the option to cancel.

Electric zaps: I get these as I take an anti-depressant medication.  U won't be aware of a raised BP level unless U are checking with a home monitor.  DH has white coat syndrome - he has a monitor, on it I don't even register  .  The idea is to take it B4 food at the same time in the monring, the best of 3 readings with a few moments in between each.

Thyroid function tests may be 'normal' but there are two other tests which GPs refuse to do - one has to pay for them, hopefully members will be along as this has been discussed regularly here.

Don't worry about being housebound for the moment: though I did, I couldn't even answer the phone.  With proper medication I gradually recovered, U will too once you speak to some1 who has time to listen.

I had 'thrush' type symptoms at the end of each bleed.  10 days then 2 without a show, followed by intense itching high up and a brown staining for 2 days.  This resolved every month so was 'normal' for me.

Some find that keeping a mood/food/symptom diary of use. 

[Dizzy16]

Hi thank you for replying to me.

So originally in 2021 they were going to start me on GDRH injections to put me into a menopausal state prior to a hysterectomy but another consultant took over and said No, I'm not old enough for hormonal issues (my mum had gone through menopause by 53).

I've spoken to numerous Dr's and nurses and they're really quite horrible, I've been shouted at down the phone "it's anxiety learn to with it", they'll section me if I don't learn to calm down my anxiety which is quite frightening to be told.
Prior to this I had just got a new job and gone back to studying, and then all of a sudden I couldn't go anymore, with the changes in cycles.

I worked at the hospital for 10 years as a auxiliary nurse, so thankfully your right I check my BP 3 times and they're pretty much normal low for me except for the times it was very high. It was 235/135 on one occasion then went back to normal (mines typically 100/68, Sorry to hear you have high BP too, it's pretty worrying when its high.

I have taken anti depressants but I seem to get awful side effects, Mirtazipine worked ok but I went to over 17st on it. Which was a huge increase.

I've had TPO which went up and back down and another done private but with both my mum and sister they have raised TSI - which they won't even test 🤦🏼‍♀️

Can I ask was it the medication that helped you? Or HRT? I'm the same answering the phone sets me into a trembling mess, I just want some normality now it's exhausting, my husband is amazing and supportive but even he's shocked by such a change! I was never a home person.

Is it low hormones that cause the thrush? Sorry for so many questions.

I keep a journal of everything for the last 3 years- moods, foods, drinks, times of happenings - hot flushes,  good sleep/bad sleep, panic attacks, even toilet changes just to try and get a clear picture.

Who knew hormones could be so debilitating 😫

[Dizzy16]

Sorry I should also say it was a psychiatrist who diagnosed bipolar January 2023 but I was diagnosed cyclothymia in 2010 which was when I came of the combined pill after 4 years 🫤

[SundayGirl]

Morning Dizzy16 

I'm not going to comment on HRT as I don't use it but I do have thyroid disease.

Raised TPO antibodies typically point to hypothyroidism (hashi's or Ord's). Raised TSI antibodies usually point to Graves disease (hyperthyroidism). It's also possible to have both at the same time. Also antibodies fluctuate depending on what's going on with your thyroid at the time.

Unfortunately, GP's won't do anything until you've had 2 thyroid function tests outside their range within about 3 months. (You won't even get a second test if your first is marked as normal.) By that they mean TSH either high or low  They also only test TSH and will only test T4 if TSH is outside the range. It's almost impossible to get T3 testing from your GP.

It's possible that having Covid has triggered autoimmune thyroid disease.  Some of the symptoms you describe fit thyroid disease, amongst other things.

For peace of mind, or to confirm, it may be worth getting a full thyroid panel from a private testing company. Also include key vitamins, folate, B12 and D along with ferritin.

I'm surprised that your GP refuses to do full testing for you considering your family history.

[Dizzy16]

Hi Sundaygirl,

So the TPO went up and back down which was odd, in may 2023 I was 1 point over normal on tsh at 0.582 and t3 and t4 were 1 point each under normal, then the following month back to normal, I've had 4 children with each pregnancy I have been hyperthyroid and after my first I went hypothyroid (very) and was told I had PND.

I've had private tests quite often which show ups and downs with thyroids but nothing out of range.

On my blood test in both Feb 2022 and Feb 2024 I suddenly became anemic? Then suddenly after 6 months levels went back up - on private testing in this point it shows a significant drop in testosterone?

My ferritin is low it has been since my first blood test at a young age, it will go up but just drop, folate and b12 have also been low, so I've been supplementing all 3 - i did genetic testing and I have issues with folate, iron and b12 😫 - fell down the thorny gene bush!

The GPS have been relentless, my friend does my bloods at home for me so I was adding the T4 and T3 onto the blood forms! It did show a drop in T3 to 5.1 then back up to 6.1

Also in the may 2023 - my white blood cells and neutrophils were very high, kidney function down, liver levels up to name a few things and no one rang to tell me 🫤 they just left me, it's been a harrowing experience to say the least. But thankfully white cells ect seem to be returning to normal.

I'm sorry you have thyroid issues too, it's quite a life changing thing to deal with.

Thank you for replying!

[Dizzy16]

DHEA-S Low end of range 128.2 ng/mg 20 - 750
Androsterone Within range 697.2 ng/mg 200 - 1650
Etiocholanolone Within range 511.2 ng/mg 200 - 1000
Testosterone Below range 0.48 ng/mg 2.3 - 14
5a-DHT Within range 1.4 ng/mg 0 - 6.6
5a-Androstanediol Within range 13.7 ng/mg 6 - 30
5b-Androstanediol Below range 10.3 ng/mg 20 - 75
Epi-Testosterone Within range 11.0 ng/mg 2.3 - 14

This is my dutch tests testosterone levels July 2024, I had one done in February 2024 that showed my testosterone had gone to 1.48 but still very low 🫤

[SundayGirl]

There's no such thing as normal with thyroid disease. Just because things are in range doesn't mean you're ok.

TPO antibodies will rise and fall. Nothing odd in that.

I too have issues with D, folate, B12 and ferritin. I monitor and supplement religiously to keep my levels where I feel good as the GP thinks as long as bloods are within range it's ok. It's most definitely not!

If you want some really excellent advice, there's a healthunlocked thyroid board with some very knowledgeable and experienced people who will do their best to help you unravel things. They will need the actual numbers along with the ranges used.

Just a quick thought. You do know about stopping biotin (one of the b's in a b-complex) several days before TFT bloods? Depending on the testing system used, it can interfere with results and skew them.

Thyroid disease is a bit of a poor relation as far as doctors are concerned. Women very often get brushed off and told that it's all in their heads 

Please have a look at healthunlocked 

[CLKD]

   SundayGirl. 

R U in the UK Dizzy16?  Is there another surgery with whom U could register to get better support?

R U able to explain why the medics think that U R bi-polar?  My Dad was ........... manic depression [I HATE bi-polar because most people have more than 2 (bi) symptoms] takes many forms.  Were U offered any medication to stabilise you?

[Dizzy16]

Thank you sunday girl, I am currently supplementing them my self, gp told me folate of 4, b12 of 156pmol/l and ferritin of 4 was ok 😒 I do stop anything with biotin (b complex 2 weeks before any bloods)

The GPS just won't listen or help at all, I've been on health unlocked and they said my levels were not bad enough to cause my symptoms which I found quite upsetting, i lost 3 stone in weight, severe tremors ect, my hands were super red and pouring with sweat..thankfully I've managed to gain the weight back but muscle loss is taking longer to recover.

Getting proper medical help and support with thyroid disease is the hardest thing I've ever tried.

[Dizzy16]

CLKD - hey i am in the UK, unfortunately there isn't, where i live it's a combined surgery area so there's 5 surgeries combined the next one is over the water as they say, so due to post code can't switch.

Sorry to hear about your dad with Bipolar, it really is a horrible illness. They say because I have mood fluctuations but it's more cyclical, and because I get bursts of energy (decorating ect) and have suffered with depression and anxiety on and off - but also the fact they left me with low folate, b12, iron, ferritin i guess hasn't helped.

They offered me lithium, quetipine, and I think it was called lomotragine? I had my lithium levels tested..and they were actually above normal, and one consultant said if it was bipolar it wouldn't be above, so that threw a spanner in the works.
I'm just really worried about the low testosterone and if my estrogen is low now.

[SundayGirl]

Some of the posters on healthunlocked can come across as a bit short. I think it's because a lot of people go there for help, get some excellent advice, then go back weeks or months later with exactly the same story but haven't followed any of the suggestions given. Sigh. Please don't take anything that was said personally.

It's possible that you are in the early stages of developing thyroid disease. It's also possible that you have other things going on too especially with your fluctuating hormone levels.

Unfortunately as I said before, GP's are terrible with thyroid issues and if you don't fit into one of their boxes, they leave you be until you do.

'over the water' - if that's where I think you mean it's a shame you can't get your GP to take you seriously as there's a great endocrinology dept up there and also a good one that deals with just women's issues 

[Dizzy16]

I only made one post, explained my issues, posted results and they just shut me down saying not thyroid related basically, so I've never returned.

I'm not sure what it is, peri/thyroid, but it's relentless, I just want to get back to normal 😔 exactly 2 years next month since I was last able to drive or walk. So peculiar.

I'm in the north West, but we say over the water as there's water between us and the next town, but the endo/gynae department where i am is awful.. we actually don't have an endo consultant at the moment, just the odd one brought in then a team of nurses 😫

[SundayGirl]

Have a read of this blog https://ibshypo.com/index.php/hypothyroidism/
The author went through years of not being believed.

If the water begins with M then I know where you mean