Info appreciated.. Pcos / Poly cystic ovarys. Thyroid. Obesity. Autism. Joint pain. Back deformity. Nutritional deficiencies.

[MrsClanger]

Hi.. My daughter is age 30..

She's been having a lot of symptoms for many years.. As I have hashimoto's I figured I'd get her a private blood test. As she has. A lot of these symptoms.

Her gp only tests her tsh so I thought best to get the antibody tests and T 3 done.... Surprising to me it has come back in the normal range. But I'm not sure if it's on the low end?

I would appreciate some advice from anyone trained or experienced in any of the issues in the title of my post..

Is she heading towards a thyroid issue?..

What else could we look at?

What should we be asking the doctor to test for?..

What specialists should we be asking the go to refer her to?

She has an array of symptoms

Poly cystic ovary syndrome (since 15.) she doesn't have any endo check ups or medication for it.

Irregular periods. & Hirtuism

She was given a contraceptive pill by a consultant nurse years ago that did help but was then took off it after a few months because she gets migraines and it was apparently dangerous. She saw an endo one time and was just told to try to loose weight. As she does not want to have children they didn't seem to want to offer any other help.

Obesity. ( 16 st at 5ft 2 )

Eating disorder fussy irregular eating with sensory issues. Sugar addict.

High functioning autism. / aspergers

Severe exhaustion,

Occasional swelling of feet and bloating. Pins & needles.

chronic joint and back pain, her lower back is curved inwards.

Migraines ( but not as many as in the past)

Sun skin sensitivity.

All the issues that come with autism.. anxiety, social issues etc.

Long term depression.

I have spent a lot of money on private low cost therapy for her over the years but it's always totally unhelpful.

Social groups don't help as she can't cope with groups and strangers. She has support, very good neighbours and regular support and visits from me.

Her weight problem and joint pain makes her reluctant to join any social groups.

I'm hoping that by fixing physical issues or hormone problems it can help overall.

Trying to get her to go swimming, as that is something she likes, will be paying for refresher lessons.

She takes an array of suppliments.

Zinc magnesium b6

High strength multi b complex.

Vitamin d

Folate.

Caste tree berry ( agnus castus I think it's called?..) to help with pcos.

Her b12 and vit d are always low.

Folate was low last tested, folate supplinent is high dose from gp.

Diabetes test was normal but near borderline... No advice from gp.

She is on codeine from the go..

She takes promethazine to sleep.

Smokes a little cannabis in the evening .. It has helped the most than anything and dramatically reduced her mood swings and suicidal thoughts.. Its been the biggest life saver ever & is a minimal amount. She also smokes tobacco.

My concern with her medications is the codeine. She has reduced the dose but the gp just shells it out. I feel this is not helpful.

I know it's a mixed and complex lot of issues.

The nhs doctor offered anti depressants but we are both worried about the risk of side affects.

I was hoping that if she had hashimoto's then thyroid meds would help as my depression cleared since being on treatment.. but it seems that is not the issue.. So I'm not sure what is best to focus on to help her.

Here are her thyroid panel test results

TSH 0.998 . ( ref range 0.35 - 5.5)

FT4. 13.20 ( ref range 11.9 - 21.6

FT3. 4.68 ( ref range 2.8 - 6.5)

Anti Tpo < 9 ( ref < 34)

Tg 13.5 ( ref <115)

Much appreciate any one with experience or information that can help fix my lovely daughter ..

Thank you so much for this forum....

[SeasideSusie Remembering]

MrsClanger

This is a patient to patient forum and no one here, including the Admin team, should be assumed to have medical training of any sort. If anyone is a medical professional then they must declare it, but even then, as this is a public forum, there is no way this can be proved and you could be given bad advice by someone purporting to be a medical professional with the possibility that advice could make things worse or be dangerous.

All you can reasonably expect from posting on the forum is that members who have experienced something similar will share their experience and what has worked for them. Suggestions based on what has worked for someone can be passed on to be considered but "advice" is never a word that I would use unless I was advising someone to perhaps get a blood test or speak to their GP etc.

[MrsClanger in reply to SeasideSusie]

Hi susie.. So sorry.. Will change title in post.. Didn't realise.

[Regenallotment Ambassador]

hi there, I don’t have any expertise but wanted to send encouragement, it looks like you are trying everything so well done.

I read a book recently by Dr Peatfield that talked about particular circumstances when someone appears to be in range for thyroid hormones but has symptoms. I think it’s referred to as cellular hypothyroidism when the hormones circulating don’t get into the tissues. US doc Eric Balcavage has a podcast called thyroid answers and talks about this occasionally with guests.

I notice the T4 is very low in range and the pituitary hormone TSH doesn’t appear to be signalling the thyroid to raise it. Could be something to ask the GP about.

How about other autoimmune conditions? Pernicious anemia? Coeliac? Colitis? Lupus, rheumatoid arthritis,…They seem to run on families.

With all of those cutting out gluten has a major benefit, all come with leaky gut and low vitamins.

Hope something there gives you more to research, good luck 🌱

[MrsClanger in reply to Regenallotment]

Thank you.. That is helpful info..will do research.. I went gluten free years ago but she's really adament she wouldn't be able to.. We have very different diets. She eats mostly meat eggs carbs and sugar. Opposite diet to me.

I'm going to try get her a referral to endocrinology and will point out the thyroid info you mentioned.. She does seem to have similar symptoms I had.Thanks again.

[Regenallotment Ambassador in reply to MrsClanger]

It’s so tricky with diet and neurodivergence isn’t it. I listened to BBCSounds >Sideways with Matthew Syed episode called ‘A small bowl of rocket’ in the car last week, there is hope 🌱 sorry I can’t seem to paste the link.

I read Supergut by Dr William Davies, that was an eye opener, his other book is Wheat belly. Baby steps maybe as and when. Sending you both hugs 🤗

[SlowDragon Administrator]

was test done early morning, ideally just before 9am and only water to drink between waking and test

Did she stop vitamin B complex 5-7 day before test as it contains biotin. Biotin can falsely affect test results

You need to test her vitamin D, folate, ferritin and B12 levels

Also 20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Her b12 and vit d are always low.

How much vitamin D is she now taking

Low B12

Is she vegetarian or vegan

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once serum B12 is over 500 (or Active B12 level has reached 70), may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

[MrsClanger in reply to SlowDragon]

She eats lots of meat and dairy Doctors don't understand why her b12 is always low .

[MrsClanger]

Hi slow dragon.. The blood test was taken at 12.30 pm.. she ate one hour before.. She did stop all suppliments for a week before the test.

I'm not sure on the doses.. But will chevk all when I see her. Thank you

[SlowDragon Administrator in reply to MrsClanger]

retest correctly including vitamins

[MrsClanger in reply to SlowDragon]

:(.. Very annoying that the clinic didn't inform me.. £50 wasted

[SlowDragon Administrator in reply to MrsClanger]

we post on here all the time that test should be early morning, ideally just before 9am and only drink water between waking and test

Essential to get vitamins tested and improved to optimal levels

[SlowDragon Administrator in reply to MrsClanger]

She did stop all supplements for a week before the test.

Only needs to stop vitamin B complex week before test……and if taking iron supplements stop these 4-5 days before test

vitamin B complex contains biotin

biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) but continue separate B12 supplement

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

[Hidden]

MrsClanger I had results (and symptoms and diagnoses) like your daughter’s when I first developed severe debilitating mental health issues at 13. It wasn’t until I was 21 that my TSH finally crept to a place where treatment was allowed… which still didn’t help as it was T4 only.

I think that even tho her results are technically “in range” her T4 is very low, which is how mine was and I suffered hideously for years because of it. I firmly believe that you can have hypothyroidism and still be inside all the ranges. Symptoms matter so much more than bloods! What is her waking temp? BP? These are other useful ways to assess her thyroid function.

If it were me I’d go to one of the doctors from the thyroid UK approved list and see if they’ll trial her on small dose of levo to see if that T4 can be helped. (This is all assuming that her nutrients are OK.)

[MrsClanger in reply to Hidden]

Hi :).. Thank you.. I m not sure if her BP or temperature but will try get these. I think her blood pressure is low ish but not as low as mine.

[Hidden in reply to MrsClanger]

Resting heart rate is also important! 🙂

[MrsClanger in reply to Hidden]

Ah yes.. Lots to check..

[TorcHouse in reply to MrsClanger]

I am sub-clinical Hashimoto's. My results have *never* been out of range, yet I have a large swollen nodule on both lobes of my thyroid eating away at them. Vitamin D was below 50nmol/L and B12/Folate low in ranges. Do not be fobbed off by half measures from the GP. Half of them have no idea what they are doing with autoimmune disorders.

I was eating the "recommended" low fat, white meat, fish diet, and wasn't pulling enough nutrients from my food. If your daughter is addicted to sugar, it could be the same. Best of luck.

[MrsClanger in reply to TorcHouse]

Thank you

[GlowCoach Administrator]

Noone here gives professional advice, just lived experience.

To me your daughter sounds like she has connective tissue issues. I say this as autistic spectrum disorders are often linked to connective tissue problems such as Hypermobility Spectrum Disorder or hypermobility Ehlers Danlos Syndrome. Fatigue can be part of that as can pain and spine deformities.

Has she had key vitamins checked latelyas that is important to get them to optimal as you likely already know.

If she is getting a folate supplement from the GP it is probably folic acid and if she does have the MTHFR genetic mutation she would be better off with methylfolate although don;t start on a hogh dose for that. Start low and work upwards as necessary.

I don't know anything about PCOS but people with collagen disorders benefit from treating whatever condition/vitamin deficiency they suffer from as they are so reliant on everything being 'right'.

Certainly sugar for me can cause fatigue so reducing or eliminating sugar if possible will help.

She might also try gluten, dairy, soy free diet as many with hEDS benefit from removing them from their diet.

Her thyroid levels aren't great but not terrible either and negative antibodies so perhaps keep an eye on those levels.

[helvella in reply to GlowCoach]

This might be of some help if hypermobility/Ehlers-Danlos is suspected.

Jessica Eccles - Hypermobilty/Ehlers-Danlos

Some time ago, I heard an interesting program on the BBC's Radio 4. Indeed, I found it so interesting that I emailed the main interviewee - Jessica Eccles. ...

helvella.blogspot.com/p/jes...

[MrsClanger in reply to helvella]

Thank you.. We thought she had that but the go did a test to see how bendy she was and she didn't meet the criteria!?

[Sneedle in reply to MrsClanger]

Someone I know who qas an occupational therapist abd had an interest in eds, told me that doctors, gps, are not always up to date on the criteria for it, as it changed a while ago. So being 'bendy' used to be one of the tests for the gp, but now it's different. Or should be.Sorry, no further info to back this up!

[MrsClanger in reply to Sneedle]

Thanks

[GlowCoach Administrator in reply to MrsClanger]

A GP wouldn't have the knowledge to diagnose someone with HSD or hEDS as they don't have the experience. You only need 1 joint that is or was if older hypermobile and there are many other factors to consider, not many doctors realise this. If you wanted to take it further then seing a specialist Rheumatologist who is experienced with symptomatic hypermobility would be the way forward.

ehlers-danlos.com/what-is-hsd/

[MrsClanger in reply to GlowCoach]

Thank you so much.. I've found one on the list I'll tell her to get the gp to refer.

[MrsClanger in reply to GlowCoach]

Thanks.. I'll check the suppliments, it's impossible to change her diet though.

[jade_s]

If her B12 is always low you might want to look into pernicious anemia. It is an autoimmune condition which blocks absorption of B12 from foods and supplements. Have her doctors tested for this? pernicious-anaemia-society....

b12deficiency.info/what-is-...

b12deficiency.info/testing/

We have a forum here on HU. We are also just patients, not medically trained. healthunlocked.com/pasoc

[MrsClanger in reply to jade_s]

That's helpful thank you

[Popeye44]

Sugar addiction is a massive problem because it affects the brain in many different ways and consequently many functions in the body. If your daughter will watch YouTube videos, encourage her to watch the Zoe videos with Prof Tim Spector and his team. All health starts in the gut. It is the bodies own pharmacy and needs to be fed adequately with the foods that produce a diverse gut microbiome. It is able to correct a lot of vitamin deficiencies such as B12. Less meat and many more plants is the way to go (I am not advocating veganism!) It will naturally reduce her weight and help with the spinal problem. I've experienced this personally since adopting this way of eating my B12 went from low to off the scale and my folate is the best in my health district!

Also smoking cannabis reduces blood flow to the brain so while it may help with pain for someone with mental health issues it can be more damaging.

[MrsClanger in reply to Popeye44]

Thank you.. Helpful info.. I'll find the videos and send them to her