Keep gaining weight and can't shift it help. - Thyroid UK

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Keep gaining weight and can't shift it help.

Shellywelly28 profile image
25 Replies

So I was diagnosed with hashimotos around 4 years ago after I had my last baby and I have pretty much been on 75mg of levothyroxine since and stayed around the same weight give or take a few pounds. Ive also been diagnosed with PCOS before I had my children, IBS, anxiety with panic attacks so take citropram for that and suffer with migrane vertigo and currently taking tablets for Vitamin D. Anyway until around May last year ive steadily been gaining a few pounds nearly every week so, so im now heavier than I was at 9 months pregnant, im currently 14 stone 3 and 5"4 .

So im completely fed up, and I eventually persuaded my gp to refer me to an Endo doctor who wasn't very helpful and only done my Tsh, Free T4 and free T3, bp 139/83 wt was 88.7kg then in January, they came back at Tsh 0.33, Free T4 17.3 and free T3 5.2 so no action there they said so then I done a 24hr urinary cortisol and IGF-1 blood test which came back normal, so no further investigations required at present. Im due back in March and I dont know what else they could try? Im getting bigger by the days and I eat healthy apart from the odd treat at weekends, very rearly drink and dont smoke, walk the kids to school everyday and walk the dog once a day. Any suggestions of any other tests? In my last letterit stated if all tests come back normal a diagnosis of fibromyalgia should be considered.

25 Replies
Hillwoman profile image
Hillwoman

Could you give us the lab ranges for your test results, plus any other results you have, e.g. ferritin, Vits D and B12, folate.

With PCOS you are likely to be insulin resistant. Have you been tested for hyperinsulinaemia?

You may be interested in this discussion from yesterday:

healthunlocked.com/thyroidu...

Shellywelly28 profile image
Shellywelly28 in reply to Hillwoman

Hi thank you for replying unfortunately the lab ranges wasnt on my hospital letter. Ive just phoned up for my latest blood results you mentioned, they were taking In sept last year

Ferritin was 22

B12 was 2.46

Folate was 5.80 and on the 4th of oct

vit D was D2-5 D3- 66

And no not as far as im aware I have not been tested for hyperinsulinaemia? Would that be a blood test?

Hillwoman profile image
Hillwoman in reply to Shellywelly28

You should be having your blood glucose and fasting insulin monitored in your PCOS clinic; poor glucose control and rising insulin are common complications of your condition. To put it rather simplistically, insulin makes you fat. My own fasting insulin level is climbing, and I've been piling on weight. Rather than take metformin and the like, I've put myself on a very low carbohydrate diet. But if you're being treated for the PCOS, you would really need to discuss all this with your clinic.

I would ask again for the lab ranges, as it's your right to receive this information. The tests would not have been reported by the lab to the doctor without the relevant ranges, otherwise the results might not be interpretable. From a very rough guess against the ranges that are familiar to me, your results look poor. How much vit D3 are you taking?

Shellywelly28 profile image
Shellywelly28 in reply to Hillwoman

I dont go to a PCOS clinic, I was diagnosed at 20 and they just told me to come back to the clinic when I wanted to have children to start the ivf process, but I got pregnant on my own?

I will try and get hold of the lab ranges, which part of my results looks poor to you? out of curiosity?

Vit d tablets just say 400units twice away but I alomost always forget the night time dose.

Hillwoman profile image
Hillwoman in reply to Shellywelly28

All the nutrient results I asked about looked poor, but we would really need to see the ranges. I don't really understand the B12 result, 2.46, for instance.

Your D3 was sub-optimal when tested. If your GP has prescribed your D supplement, I would ask for a re-test or an increase in dose, as 800 units per day isn't much, especially in winter.

I think your GP needs to take your PCOS more seriously, especially given the weight gain. It's such a common effect of the condition. PCOS has other implications for your health besides fertility, so in your position I think I would want the condition monitored at a specialist clinic.

Shellywelly28 profile image
Shellywelly28 in reply to Hillwoman

Ok thank you The b 12 result was just the figure the receptionist from my gp gave me over the phone when I asked for my latest results?

Is there anything else the endocrinologist could maybe be looking into? Thanks for your time

Hillwoman profile image
Hillwoman in reply to Shellywelly28

You could ask for your thyroid tests to be repeated, and to include antibodies this time. Docs always think nothing can be done about antibodies, so they don't always bother to tell thyroid patients whether or not they have Hashimoto's. Quite a lot of people on the forum find it beneficial to cut gluten out of their diet, and even dairy, in order to bring down the ab count and quell the autoimmune response.

Did an endocrinologist diagnose the PCOS? I thought generally gynaecologists managed the condition, but it might be one of those problems that ends up being split between different specialists.

Shellywelly28 profile image
Shellywelly28 in reply to Hillwoman

No it wasnt the endo, it was about 15 years ago now that I was diagnosed but I think it was deffiantly the gynaecologists, plus it was through my old gp and since then my old records didnt follow me for some unknown reason but I just remember having a scan? And them telling me to come back for IVF when needed. I know I deffiantly have hashimotos because of the antibodies in past blood tests and when I had a scan on my thyroid, they seen the inflammation.

Sorry what is the ab count and do you think the antibodies needs retesting? Would that help?

I just dont know where to turn next? Do I go back to my own Gp to be refered to a different specialist or just ask the endo doctor to try other tests when Im back there in march?

Hillwoman profile image
Hillwoman in reply to Shellywelly28

abs = antibodies. Sorry, just using shorthand. :-) Probably you don't need to retest abs, since you knw you have Hashi's.

If all you've had is an ultrasound, it would be a good idea to pursue a referral, though the GP would probably be more persuaded by other symptoms than weight gain. The profession tends to look on all forms of weight gain merely as a loss of self-control, when in fact it is nearly always driven by hormonal imbalance of one sort or another.

Shaws has posted an interesting reference further down your post about the links between ovarian cysts and hypothyroidism. I remember reading about that years ago, but had totally forgotten. That complicates the picture, but if you can get access to a specific PCOS clinic in your region, they ought to look at the whole picture, and not just focus narrowly on whether you have insulin resistance, or whether you have ovarian cysts. As I say, if I were in your position, I think I would push for a referral to a PCOS clinic. You could contact your local PALS (they should be listed on the NHS website) and ask for information about the available services where you live.

Shellywelly28 profile image
Shellywelly28 in reply to Hillwoman

Ok thanks so much for your time

Hillwoman profile image
Hillwoman in reply to Shellywelly28

You're welcome. :-)

Avidreader profile image
Avidreader

I lost my weight after 20 years on Levothyroxine ( which I now know didn’t work for me ) by following the Amy Myers autoimmune diet -

I was 16:3 stone now 13.12 it came off in 3 months !

Like you I always ate healthy & was gluten free for ten years -

Now no grains at all & no SOY - no dairy ( it’s awful - but changed my thyroid life !) use coconut enzymes instead of Tamari

I eat protein with every meal & good fats , loads of veg fruit coconut milk make an organic chicken bone broth every week ( gut health ) but the family also love it !

I revel against it at times - but to feel well after 20 years is worth the denial ! I have now also been on NDT Nature Throid for 4 months so far - I felt amazing in the beginning - but now have slumped a bit with

Gritty eyes

Arms weakness

Bit more fatigued - so again I’m addressing my gut health to see if that helps - having more blood tests May with Endo

Shellywelly28 profile image
Shellywelly28 in reply to Avidreader

Thanks for the reply, I dont really eat much bread or pasta and I do find if I have milk in the morning I feel awful for a few hours? Which is strange because im fine at any other of the day.

I will have a little look into the Amy Myers autoimmune diet - though thanks.

shaws profile image
shawsAdministrator

I don't have a link for the following re PCOS but I will add a copy of the statement. Few doctors or endocrinologists seemto be aware of the complications which can arise and I hope you have doctors who have an open mind. It was posted by a doctor/scientists who was also an Adviser to Thyroiduk.org.uk:-

Multiple Ovarian Cysts as

a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008"

SlowDragon profile image
SlowDragonAdministrator

So are you strictly gluten free? Doesn't sound like it?

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect 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

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Vitamin D, folate and ferritin all need to be at very good levels not just in range

Your B12 test doesn't make sense.

Can you check that

Vitamin D needs to be around 100nmol (Uk units)

Better You vitamin D mouth spray at 2000iu daily or 3000iu daily is more like dose needed

Important to retest twice yearly

Vitamindtest.org.uk £28

Detailed supplements advice on Low vitamins here

healthunlocked.com/thyroidu...

PCOS also linked to gluten intolerance

Shellywelly28 profile image
Shellywelly28

No I dont have a gluten free diet no, my mum actually has celiac disease and I have had a blood test to see if I was,but apparently that came back fine and when I mentioned the idea of going gluten free, to see if it helped drs just dismissed it and said its upto you. So ive never really strictly stuck to it.

Ok I will double check about the b12 then and see what they say

Avidreader profile image
Avidreader in reply to Shellywelly28

definately gluten free I agree - & avoid all the GFree crap thats out there too, they add xanthum gum also bad, sugar etc. Dairy too. We can't cope. read labels avoid SOY - I avoid all grains now . Boring , awful, but my energy levels are more important

Shellywelly28 profile image
Shellywelly28 in reply to Avidreader

Ok thank you

Avidreader profile image
Avidreader in reply to Shellywelly28

I know it sounds daunting when you’re not feeling well 🤔

Is your weight gain mostly around your tummy? Was you PCOS confirmed by a scan to see if you had cysts on your ovaries? The fact that you have been pregnant puts that diagnosis into doubt. Did you have an early morning cortisol blood test? Your Endo has already done a 24 hr urine for cortisol however they can come back negative. Your Endo would have been looking to see if you have Cushing's disease & possibly needs to be investigating this more with further 24 hr urines, blood tests, such as the low & high dose Dexamethasone test.

Shellywelly28 profile image
Shellywelly28

No weight gain is all over. Yes I had the scan when I was around 20. No I havent had an early morning blood test, just the 24hr urine.

Sorry what is the low & high dose Dexamethasone test? Ive never heard of that.

SlowDragon profile image
SlowDragonAdministrator

Have you gone strictly gluten free yet. It's very likely essential.

Also sounds like you may have dairy or lactose intolerance

thyroidpharmacist.com/artic...

Your vitamins were really not brilliant either

Vitamin D needs to be around 100nmol. Try Better You vitamin D mouth spray as it avoids poor gut function

Ferritin needs to be half way in range - eating liver once a week should help improve

B12 and folate - both low. Taking a good vitamin B complex and perhaps a sublingual B12 as well would improve levels

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Selenium supplements can help improve conversion too

PCOS is very often improved by gluten free diet too

verywell.com/gluten-and-pco...

Shellywelly28 profile image
Shellywelly28 in reply to SlowDragon

Thank you, I have changed our pasta to gluten free but we dont eat it often anyway thats the only conscious thing Ive done, so I havent gone strict like I need to.

SlowDragon profile image
SlowDragonAdministrator in reply to Shellywelly28

Yes it needs to be absolutely strictly as if you were coeliac

Lots of gluten free flours available. Need to look out for hidden gluten in pickles, beer, sauces etc. Read all labels carefully

Also avoid all soya including soya lecithin if at all possible

Getting vitamins optimal is very important too

Shellywelly28 profile image
Shellywelly28 in reply to SlowDragon

Ok thank you

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