Should I see an endocrinologist ?and if so can ... - Thyroid UK

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Should I see an endocrinologist ?and if so can anyone recommend a good one I'm ased in South wales but willing to travel.

Tinkerbell_84 profile image
20 Replies

Hi allSo I've been publishing my results for many weeks now and have had fantastic advice from this page. Following on from my private blood test which I've attached, I booked to see a Gp but I tried a different one as I've been seeing the same one for 18 months. Well I feel absolutely deflated. I've waited 3 weeks for the appointment and it was a complete waste of time. I even wrote everything down before my appointment so not to forget anything but she wasn't interested in anything I said and went as far as to say the symptoms I'm getting won't be associated to low thyroid or Iron which baffled me as they are symptoms on the NHS website. I basically was told to consider the Pill it coukd be perimenapause even though my hormone levels they checked were normal.

I even took my husband in with me and he asked she's boardline low on so many tests and then board line high on some of my Full blood count she's got loads of symptoms and she basically said everything is in Range so it can't be that. I just feel like crying and thinking is it me going crazy and actually I'm over thinking everything.

I've gained nearly 1 stone which is making me so incredibly down, cold all the time, swollen fingers and very sore joints, muscle pains, irregular periods and heavy for nearly 2 years now, vertigo dizziness, muscle pain brain fog forgetfulness, tinnitus the list goes on.

So I just think should I self supplement and Try get all my bloods back up or see a endocrinologist.

I just wondered if anyone has seen anyone good that actually listens or is it best to give supplements ago?

CRP 0.305

Ferritin 30.8 range 30-169

Folate 12.2

B12 64.3 range 37.5-188

Vitamin D ⁰89.3 range 50-250.

TSH 3.54 range 0.27-4.2

Free T3 3.8 range 3.1-6.8

Free thyroxine 12.1 range 12-22

Thyroglobulin antibodies 28.3 range 0-115

Thyroid peroxidase antibodies 25.7 range 0-34

Thanks so much in advance

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Tinkerbell_84
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Buddy195 profile image
Buddy195Administrator

I would look to improve key vitamins as a first step; then retest levels.

It’s essential that key nutrients - Vitamin D, Vitamin B12, Folate and Ferritin are at optimal levels to support thyroid health:

I like my levels to be:

Vitamin D (100-150nmol/L)

Vitamin B12 (Total B12 at top of range or for Active B12 100 or above)

Folate (at least half way through range)

Ferritin (half way through range) Although some point to 90-110ug as optimal.

According to guidelines issued by NICE, 30ug or less is deficient. At 30.8, I would ask GP for a full iron panel test.

If you choose to take an iron supplement, take alongside Vitamin C (eg orange juice) as this aids absorption. Also look to increase iron rich foods in your diet:

dailyiron.net/

If any members wish to recommend an endocrinologist in S Wales, this must be by private message only, as per forum guidelines.

Tinkerbell_84 profile image
Tinkerbell_84 in reply to Buddy195

Thank you so much for the advice. The gp I saw today she is retesting my Iron but she said even my Iron in the private test is absolutely fine and they would only do anything if it went below 15 and she is rechecking my thyroid. My thyroid has been checked for the last year regularly and it's been under range every test apart from twice when the test was taken at 11am. All my tests where is been under were done before 9 am. She said she's never heard of this before and something they do see as an issue.

Can I ask is there a supplement for folate?

I already take a vitamin d supplement of 2500iug and have been for around 6 months ths I'm not sure how to get my vit d up any more 🤣

I take a vit c tablet water soluble as my vestibular specialist said to take this and vit d and to be fair since taken both of these my dizziness is alot better than it first was.

Sorry I didn't no know about asking direct for endocrinologist.

Buddy195 profile image
Buddy195Administrator in reply to Tinkerbell_84

 SlowDragon has great links about vitamins, so will copy her in for further advice.

I personally improved folate and B12 by taking Thorne Basic BComplex, but these tablets are too large for some.

Further information on endo recommendations (for future reference): You can name a doctor when asking for feedback on the forum, but replies need to be via private message.

A list of thyroid -friendly endos (NHS and private) can be requested by contacting TUK:

thyroiduk.org/contact-us/ge...

With any recommendation that you get, it is advisable to complete further research yourself before making a decision.

Tinkerbell_84 profile image
Tinkerbell_84 in reply to Buddy195

Oh thanks so much I'm willing to try anything. I waited to try anything as wanted to see why gp said but wish I hadn't wasted the last 3 weeks waiting to see her. 😕

Thanks so much

This page has really made me feel like I'm not alone or going crazy so thank you so much ♥️

Jefner profile image
Jefner in reply to Buddy195

It’s essential that key nutrients - Vitamin D, Vitamin B12, Folate and Ferritin are at optimal levels to support thyroid health:

What if your body destroyed your thyroid as in my case with the Hashi's. My ultrasound back in 2016 showed literally nothing left on one side and barely detectable on another. Do optimal levels of key nutrients still apply?

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

My ultrasound back in 2016 showed literally nothing left on one side and barely detectable on another. Do optimal levels of key nutrients still apply?

Yes absolutely essential for anyone with thyroid disease to maintain OPTIMAL vitamin levels at all times

That frequently means taking daily vitamin D, separate magnesium, daily vitamin B complex

Often initially separate B12.

If vegetarian or vegan, likely ongoing B12

And essential to maintain good iron and ferritin levels.

Ferritin minimum of 70. And ideally at least around 100

If cause of hypothyroidism is autoimmune……approximately 86% patients find it helpful or essential to be strictly gluten free

Approximately 50% dairy free

Jefner profile image
Jefner in reply to SlowDragon

yeah pretty much all my levels from my last full blood panel were ok but someone did mention that on my latest test my folate could be better but I have been on the same B Complex for a few years now and really want to change to another one because of the existing anxiety issues that have plagued me for many many years, even pre diagnosis, Niacin can cause issues for anxiety sufferers so I am looking for a complex that has a lower amount along with a lower dose of B12 because every test result my B12 comes back over range. Am still struggling to find the right one as one brand has too much of something and another not enough. I also want one with a lower dose of Biotin.

I have been on this one for a few years now prnt.sc/7csKr2IjrT5H and looking at this one as possible alternative prnt.sc/Bz2p8OU_Usil or maybe this one prnt.sc/SV-iJ3ki74PN. With all this damn brain fog I just don't know which one to try lol

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

B12 will invariably be over range when supplementing. Ignore it

The week before testing when you stop vitamin B complex, recommend you take a separate daily methyl folate instead - eg Jarrows methyl folate 400mcg

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

Post discussing different B complex

healthunlocked.com/thyroidu...

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

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

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

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast as are stimulating

Jefner profile image
Jefner in reply to SlowDragon

I am a late riser so my breakfast is at lunchtime lol Do you mean this one and it says to take 2 daily bodykind.com/supplements-c1...

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

Yes…..most people find one tablet per day is fine

Jefner profile image
Jefner in reply to SlowDragon

do you mean they they know purely by how they feel or test results? think I might try it cus the Niacin level is a lot lower too

SlowDragon profile image
SlowDragonAdministrator in reply to Jefner

Test results

Jefner profile image
Jefner in reply to SlowDragon

thank you, just put an order in for some to try.

SlowDragon profile image
SlowDragonAdministrator

I replied in depth regarding all your vitamins in previous post here

healthunlocked.com/thyroidu...

A) With dizziness GP should test for Pernicious Anaemia

Did you get her to agree to do this?

Once been tested start on B12 daily - or B12 injections if GP is going to prescribe

A week later start daily vitamin B complex

B) Ferritin is deficient

Have you got full iron panel test organised, either via GP or via Medichecks

If not get that done

And significantly increase iron rich foods in your diet everyday

C) increase vitamin D to 4000iu daily and add a separate magnesium supplement in afternoon or evening

Retest thyroid and vitamin levels in 2-3 months

Then consider seeing thyroid specialist if thyroid levels still low

How old are you approximately?

Pre or post menopause

Taking any regular medication?

Tinkerbell_84 profile image
Tinkerbell_84 in reply to SlowDragon

Hello slowdragon

Yes thank you so much I didn't start taking just incase drs wanted to do blood work which she is re doing Friday she's only some tests but said even though my private bloods are low with medicheck these wouldn't be low with nhs and said all my symptoms the long list are nothing to do with low thyroid or low iron even though all my symptoms are on nhs website. My husband and I were baffled by her making this statement. She couldn't even answer why I have so many symptoms.

I asked about Pernicious Anaemia as my nurse friend said the same and she completely ruled this out and said I don't have this. I don't know how she could rule it out without testing . She said she wouldn't even test for this !!! She said going by the serum b12 test I had 6 months ago I'm definitely not deficient and only that would show if I had pernicious A.

So no nothing regarding supplements

It was generally the worst apportionment I have had and I wish I had stayed with my original Dr.

She said the Ferritin is not deficient and the nhs state it has to be lower than 15 and they won't be giving me supplements for this. She is retesting it as I asked her too.

I have asked for a full panel iron test but she didn't show me the blood form so I'm not sure what she is testing.

I've got a blood test Friday at 8.25 as I insisted it had to be before 9 but she told me any time of the day the blood test for thyroid can be done but I made sure I had an early appointment after all the advice from this page.

Ok thanks so much I've gone up to 3000iug but I will go and buy a 4000iug today.

With regards magnesium can I take this as my magnesium levels were 0.97 range 0.80-1.0 can I still take magnesium if so is there a type?

Yes I am 39 and still having periods .

Thank you so much I've felt so deflated as she was so dismissive and just said all my symptoms were nothing to do with anything I had suggested. I had written everything down and they dismissed it all so in the end I gave up half way through my appointment.

I did ask for an Iodine blood test and zinc but she looked at me and said we don't do those on nhs.

It felt like I was a problem even being there. I work part time but my job won't me to cut my hrs and I'm not fulfilling my hrs and I'm still not driving but she wasn't interested.

I did explain the weigh gain for me is a big issue as I have such confidence issues as it is.

Thank you so much for all the advice and I will book to check all my bloods in 2/3months. Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Tinkerbell_84

Yes…….sadly this is very typical

NHS will only test and treat vitamin deficiencies

You will need to self supplement to maintain at optimal levels

It’s not practical to test for Pernicious Anaemia privately so you will just have to start on supplements

If B12 remains low at next test after 6-8 weeks on daily B12 and daily vitamin B complex ….then look at getting B12 injections instead and continue daily vitamin B complex

Come back with new post once you get iron/ferritin results via GP

Again, thousands upon thousands of U.K. patients have to self test, and self supplement to maintain OPTIMAL iron

retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Tinkerbell_84 profile image
Tinkerbell_84 in reply to SlowDragon

Oh thank you so much.With regards to b12 you take that as a supplement and then additionally take a b complex do you have to wait a time before the 2 doses or can they be at same time.

I also take Vit D and Vit c is there certain times when I best ro take these supplements.

Thanks so much as soon as I get my results I'll post a new post thanms so much 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Tinkerbell_84

B vitamins are best taken after breakfast in morning. B vitamins are stimulating

Start with B12 first

Then a week or so later add separate vitamin B complex

B complex can initially make some people feel a bit wired …..but should pass in 3-4 days

If you get Igennus vitamin B complex, you can initially start with just half a tablet or even a 1/4

One tablet per day usually enough

Vitamin D…..if its mouth spray can be taken anytime. If it’s tablets, take with meal that has highest fat content to help with absorption. Usually that would be evening meal

Vitamin C any time

Tinkerbell_84 profile image
Tinkerbell_84 in reply to SlowDragon

Oh thanks so much slowdragon 😊

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