Hashimoto’s & possible PCOS :(

[MintChocCat]

Hi everyone,

I am 35 years old. I’ve recently got married. My partner and I are now trying to conceive.

After long standing symptoms of fatigue, low mood and hair growth I recently saw a private endocrinologist and had some extensive blood tests. I’ve had thyroid blood test by nhs previously but it didn’t pick up what private one did.

He diagnosed me with Hashimoto’s disease (an autoimmune condition that attacks my thyroid) apparently it eventually leads to hypothyroidism. He said I may have PCOS as well and has referred me for an ultrasound. He has prescribed me folic acid due to a folate deficiency and advised I lose weight. I am not massively overweight but my BMI is around 29 I think… thing is I exercise a lot and I’m struggling to shift weight. He advised if no cysts on ovaries to go back and see him and he’ll prescribe Metformin.

I am terrified. I thought I was relatively fit and healthy and to have received this diagnosis while we are tying for our first baby makes me so upset and worried.

I am now trying to amend my diet and lifestyle to include anti-inflammatory foods and stress management - apparently vigorous exercise is bad for my Hashimoto’s

Has anyone got any advice or positive stories with similar conditions?

Be careful of what you read from questionable sources online, exercise should be treated no differently for someone with hashimotos than someone without, also diet, same dietary guidelines regardless.

Diagnosed with HD 12 years ago after a stressful time and losing 4 stone and dropping to 5 1/2 stone.

I feel the cold badly.

Really badly.

I had my first baby at 34 and 42. No problems getting pregnant although I did have 5 m/c those were with a different partner when I was in my 20s.

Exercise by running / walking / swimming. You may need thyroxine. Be wary of going down rabbit holes and supplements from doctors who think they know HD.

It doesn’t sound like it is fully triggered. So relax and try for pregnancy normally and exercise normally.

Thank you so much, this is really helpful advice.
I am wondering about thyroxine too. He said to keep trying for the next 3-6 months, and if still having issues, I’ll likely go back and discuss this.

Sorry to hear about your experience. I lost my Dad a few years ago and with COVID and everything else, I’ve just experienced chronic stress, which I find hard to manage with a stressful job.

It’s interesting that you lost weight, I can’t seem to shift at all

Thank you for your response. I do try to stick to credible sources. Are you sure it’s fine to do intense exercise? I was considering walking, cycling, swimming and Pilates.

Absolutely, and I say this as a HCP and fellow hashimotos patient. Obviously within what you feel comfortable with and within energy levels/have appropriate rest days, but this is the same for everyone. Generally following department of health guidelines for cardio/strength training and you can't go wrong, although most importantly, do what you enjoy!

Your best resource is probably https://thyroiduk.org/ there is an awful lot of misinformation about hashimotos, especially from the US unfortunately.

I am 36 and had two children at 26 and 32 with no issues and the vast majority of people with hashimotos will, you must however keep an eye on your TSH through pregnancy and mention that you have an autoimmune condition to your midwife.

Thank you lovely for being so helpful.
Reassuring you have two children yourself! When were you diagnosed? I’m using ovulation sticks, so still ovulating but very long cycles which I don’t think is great! It’s a shame there’s so much misinformation… feels like a minefield!
I have come across that website, I’ll take a look!

I was diagnosed at about 27, and was soon on quite a large dose of thyroxine. I have to say it has minimally impacted my life, the only time it becomes troublesome is when my TSH rises again and I'm needing a bit more thyroxine, I go through a couple of months of feeling fatigued, needing a lot of sleep and then realising 'oh, this isn't the usual me', down to the GP and get a blood test, increase the dose. Otherwise it is just monitored yearly.

I'd just try and not worry (easier said than done, I worried so much too when trying for my second and was pregnant within three months)

If it is taking a while then consider a private fertility work up at a dedicated clinic with full fertility bloods/hycosy, or if a year and no luck, then referral by GP to NHS fertility (there isn't as long a wait for this as you might think in many areas for initial tests)

Honestly though, you're far more likely to have no issues at all than to face any problems.

One plus point, if you ever do need levothyroxine, it's free prescriptions 😆

Haha, that’s good to know about the free prescriptions.

im extremely fatigued - that’s by far been the worst symptom of all - having naps at home on my lunch breaks at times. Too tired to exercise. I’ll keep monitoring and see how I go.

Thanks for the advice re fertility clinic. Only worry I have would be cost in terms of going private I guess.

Do you know what your TSH level is? I have hashimotos but because my TSH isn’t above 4 wasn’t considered to need levothyroxine. After reading numerous studies which have concluded fertility can be negative effected by a TSH over 2.5 and giving these to my GP he finally got an endocrinologist to approve prescribing levothyroxine (this isn’t normally a GP decision, they prescribe under direction of an endo). 2 years of TTC & pregnant within 3 months of starting. Just saying be wary of being told your levels are ‘normal’ without knowing what they actually are, NHS thresholds aren’t also optimal especially not for fertility.

Absolutely this also!

This is my blood test results which show TSH & T4. Not sure what is normal or abnormal. Still learning about all this stuff…

Here

Would refrain from using ovulation sticks or kits because they’re a waste of time if the menstrual cycle is irregular. These kits measure LH and if there is an excess of LH (commonly seen with PCoS) the kit reads that. What you need is a firm diagnosis; is PCOS actually present too?.

Your TSH is below 1.0 so I wouldn’t be worried about Hashimoto’s at this point or thyroid function affecting fertility. I disagree with previous PP not using OPK’s with PCOS, I have very irregular cycles with PCOS and have always found a peak, just means testing for weeks generally rather than a few days.

Ah okay.

They are still investigating PCOS. The endocrinologist said PCOS is a spectrum disorder, and I’m showing signs. I’ve been referred for an ultrasound so they can check my ovaries for cysts, so I guess that would confirm the diagnosis of PCOS firmly. I appear somewhat on the cusp currently.

I am unsure about how to go about TTC…

I get a peak too… and my cycles aren’t very very irregular. I still get a period each month, it just varies somewhat. I have a friend who has 60 day cycles and they are very inconsistent.

My cycles

A BMI of 29 is borderline obese, not “not massively overweight.” Surely you didn’t really think you were “fit and healthy?”

Take it from someone who has PCOS: your weight matters A LOT. If I gain even 5 lbs past my normal weight range, my periods stop completely. Body fat is an active organ, and it secretes estrogen, which affects the reproductive system. Too much, and you’re not going to have a cycle. (Too little, and you won’t have a cycle, either.)

PCOS is also mutually reinforcing with insulin resistance (pre diabetes.) When you eat too much, your pancreas is secreting insulin to get glucose into your cells, but over time, the cell receptors get less sensitive to the insulin. The unabsorbed glucose and insulin in your blood stream throws off your reproductive system. In turn, the hormonal dysregulation makes you hungrier and also slows down your caloric expenditure by about 100 calories per day, which can make you inclined to eat more and gain more weight.

You’ve got to lose it.

I exercise a lot… cycling, walking and occasional weights. I also hike occasionally. It’s been VERY hard to lose weight. It’s not like I am not trying. It’s really frustrating actually. It doesn’t help that I have a job where I’m sat down for most of the day too.

I’ve started considering weight loss medication, oral or injections. I don’t know what more I can do. I’ve amended my diet too. I don’t drink alcohol, and very little UPFs.

I’ve been diagnosed with PCOS.

It actually states on opks to not use these if PCOS is an issue. These kits work on two misleading principles; that a rise in LH is immediately followed by ovulation and there is one rise per month. Both are not true. Do not waste your money.

I would have a day 2 test done to compare your LH level against that of FSH. That should also be repeated monthly ideally. Blood tests are far more accurate than opks. Testing using such things for weeks on end is a waste of both time and effort.

PCOS is complicated as well because not all women with it are insulin resistant. It is a very individualistic disorder that affects every woman with it differently.

Sone PCOS patients follow a low GI/GL eating plan and this can help. It’s far more sustainable than low carb.

Just checked again and my BMI is 26.4

What is a day 2 test? Where do I get this done?

A day 2 test can be requested by a gynaecologist or perhaps the endocrinologist you have been seeing.

Thanks x

Oh! That’s much better