Where next?

[StillEverHopeful]

Please can you lovely folk give me your thoughts.

Photo is if my latest results following my first endo appointment. I have an ultrasound booked for next month and am waiting on results of a 5HIAA urinalysis.

The endo is saying I am slightly over medicated and I have Chronic Fatigue...and is asking GP to refer me there.

My energy can just vanish and if I “push” myself my energy crashes (gently walked 2 miles with lots of stops Saturday & wiped out for Sunday &Monday) not got enough energy for general household chores etc..

I also have mild blood pains in my thighs, most noticeable when in bed.

Sweating all over on mild activity & can even occur just sitting. When cold I am really cold when hot feel over heated but thermometer says temp varies between 36.3- 36.9.C

Currently on 100mcg levo. (Doubt I would get doctors to add t3 or assist with NDT)

Supplement Vitamins D K B12 & folate plus magnesium citrate. Levels seem ok.

Could it be I really do have CFS?

[Jazzw]

Noooo, you’re not overmedicated. Yes, your TSH is suppressed but if you were overmedicated either your FT3 and/or FT4 would be overrange and they aren’t. Ergo, not overmedicated. Suspect your Endo isn’t really an Endo but a diabetes specialist...

According to the bottom set of results and the FT3 result there, 100mcg is fine - there’s even room for a small dosage increase. TSH is almost irrelevant in a treated hypo patient. You just can’t use it to monitor dosage requirements. Sadly your Endo doesn’t seem to know that, but resist a reduction in dose at all costs.

How much Vit D are you supplementing? Do you know your results? Sweating can be a low Vit D symptom.

[StillEverHopeful in reply to Jazzw]

Sadly she’s a specialist in paediatric congenital hypothyroidism... thankful she is not reducing levo.

Will post as reply to my post latest vit results.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Some of your symptoms sound like low vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you have results and ranges

Do you have Hashimoto's? If you do are you on strictly gluten free diet?

DIO2 gene test may be next thing to consider

thyroiduk.org.uk/tuk/testin...

[StillEverHopeful in reply to SlowDragon]

The tests results the endo organised are in the attached photo with the starting post.

Would you like me to transcribe them into a new post along with the vitamin ranges I have posted in this thread?

Thanks x

[StillEverHopeful]

Medichecks results for vitamins end of Aug 2018

Active B12 210 pmol/L (25.1-165)

Serum Folate 8.32 ug/L (2.91-50)

25 OH vit D 79.9 mmol/L (50-200)

Most recent thyroid compilation taken on 20 sept 18 shown in the photo with first post.

Supplementing

D3 125mcg (equal to 5000iu I think)

K2 mk7 100mcg

Magnesium Citrate providing 400mg magnesium

Recently added Folate (not folic) 400ug and B12 400ug

Since getting a “cheap-bit” (like a Fitbit)it has told me I’m not getting enough deep sleep which has correlated with extra fatigue. I often find my muscles won’t relax enough as I wait to drift off. Am practicing healthy sleep habits too.

[SlowDragon Administrator in reply to StillEverHopeful]

Vitamin D mouth spray by Better You is good as avoids poor gut function.

Suggest you supplement 1000-3000iu for 2-3 months and retest. It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Folate is low. Supplementing a good quality daily vitamin B complex, one with folate in, not folic acid may be better than just folate.

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...

Have you had both TPO and TG thyroid antibodies tested for Hashimoto's

Are you on strictly gluten free diet?

[StillEverHopeful in reply to SlowDragon]

Went gluten free September and am continuously to working on vitamins levels.

My medichecks have always been negative for antibodies.

Hospital did these Sept 18.

thyroid peroxide antibodies 54 (0-60 iu/ml)

Thyroid stimulating immunoglobulins <0.10 (<0.56iu/L)

It’s starting to look like I’m going to have to have the CFS label they are so keen to give me as I cannot see anything else to eliminate

Thanks for your advice. Xx

[greygoose in reply to StillEverHopeful]

You don't have to have anything. Just keep refusing that diagnosis, because once it's on your notes, you will be consigned to the dustbin and no-one will ever help you again.

You can have Hashi's without having high antibodies. Have you ever had an ultrasound? Worth having if you can get one.

It's quite possible that despite your labs, you actually need an increase in dose. But, your conversion looks ok.

[StillEverHopeful in reply to greygoose]

Attended thyroid clinic at Addenbrookes and am booked for an ultrasound next month. Really hope it (Or the 5HIAA test) gives answers and a proper way forward

Back in April/May/June my neck was super sensitive couldn’t even wear thin necklace with feeling I was being choked. since then it has slowed improved to just “tablet stuck” and still avoiding necklaces although not as awful as it was.

My follow up appointment is in December although she has already written to GP telling him to refer me to CFS team! Feels like I’m being pushed into the dustbin before all results are in. Have to see GP at end of month for renewal/review (ha ha) of prescription as only have one repeat left so will be digging heals in if he starts about cfs.

Wondering if I should look at reverse T3 test or if conversion ratio suggests it isn’t relevant.

[greygoose in reply to StillEverHopeful]

You don't seem to have a conversion problem. Testing rT3 wouldn't give you any information that you don't already have.

[SlowDragon Administrator in reply to StillEverHopeful]

Only recently Gluten free. It can take several months for gut to heal and slow improvements

TPO are so near the top of range you can probably assume it's Hashimoto's

You may find adding T3 is transformative

If you have DIO2 gene variation, most patients need addition of small dose of T3

Getting tested likely your next step. Unfortunately not yet available on NHS unless in Kent

Roughly where in Uk are you?

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne


[e-mail]

[StillEverHopeful in reply to SlowDragon]

I’m in Norfolk. I have the list from Dionne but last time I asked on here for folk to PM me feedback about a couple no one replied so I looked on NHS choices and chose Addenbrookes as it had a dedicated thyroid clinic which had to be a better option than local hospital with lots of great diabetic Endo’s.

I am wondering about arranging my own gene test before returning to Endo who said they don’t do it but do a t3 trial and that she didn’t think my results indicated it (to do with T4 t3 ratios I think) my heat rate has always been faster than most, so they don’t like that either.

It seems that my T3 has improved since going GF as couldn’t get gp to increase it in July (started August with some early blips) and eating liver weekly.

I guess once the endo proclaims CFS (she has written to Gp saying as much before all test results in) I will be back for advise on self medicating with T3 or NDT.

Thank you for your encouragement. X

[SlowDragon Administrator in reply to StillEverHopeful]

Good that GF and liver are helping

I would get gene test done personally

It can be very helpful in getting T3 prescribed assuming you test positive

Vitamin B complex and improving vitamin D may help too

[SlowDragon Administrator in reply to StillEverHopeful]

Norfolk support group

edp24.co.uk/news/health/nor...

wymondhamandattleboroughmer...

See Tara's reply

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

I have read that some endo's at Addenbrooks won't prescribe T3 if TSH is suppressed

Link to posts on here about Addenbrooks

healthunlocked.com/search/p...