Recent GP visit - Thoughts please!

[Sleepysparrow]

Hi. I'm 60. Last week I just couldn't function, at my whit's end - again. Did another e-consult. Typed out all my history, including being diagnosed with CFS in 2011 and struggling since then with the list of symptoms. Also included my Medichecks thyroid panel results, which have been ignored by the surgery so far - these indicate Auto immune thyroid disease along with all the symptoms and family history (Mum). I've been offered antidepressants but not taken them. I've been on HRT (topical gel and progesterone pill) for 6 months - it's helped a bit. Been to GP recently with severely aching legs, waking me up at night, also on-going severe brain fog, got a 3cm gall stone, no eyebrows, no appetite, no libido.

Had a NHS celiac test and it was negative.

Previously, Ferritin was 13 (R = 15-300) so I was put on ferrous fumarate for 3 months and re-tested, now gone up to 56. (that was when I went with aching legs keeping me awake and not being able to walk properly or without aches).

After reading about B12 deficiency on this site and PAS site - I suggested that I may benefit from a trial of B12 injections as I've tried everything else - and I've been a vegetarian for 30 years.

(medichecks Active B12 in May was 124 pmol/L Range: 37.5 - 188

NHS serum B12 =261 ng/L Range: 150 -900)

I was invited in for a face to face consultation. I asked for a specific GP who has been sympathetic in the past.

She did agree to give me a B12 injection then and there, which surprised me. As I was 'within the range', she said she didn't need to give me one and not to tell anyone as she said it's become a fashionable thing now and many beauty salons offer them as they can give you a high, she didn't want the NHS to be inundated with people wanting them I think. I thought well, I wouldn't mind a high thank you very much. Anyway, she said I was sensible and she'd give me a repeat prescription for another B12 in 12 weeks!

I suggested my ferritin was still low at 56 but she said it was fine and that most women are around 56. But she did give me a script for more ferrous fumarate.

I have to report that by the end of the following day I felt much more 'awake' - less aches, more 'with it' cognitively - brighter, livelier. I tried not to 'think' it was the B12 but my husband noticed the difference and my sister. And I was able to do things without utter burn out. Mainly, I was able to walk without a rolling gait due to my weak, achey muscles!

Sadly I feel as if the effects are waring off now, a week later. I'm back to one task a day and walking as if I have a limp. I'm going to look into getting a private interim injection before my next one in 11 weeks. I don't want to push my luck and ask the GP for another one.

She said my thyroid is fine and that CFS was like long covid and they haven't got to the bottom of what causes it yet. But she did offer me a blood test for Thyroid Peroxidase Antibodies as I'd put my medichecks results (below) in the e-consult. Blood test is tomorrow morning.

(TSH 6 mIU/L Range: 0.27 - 4.2

Free T3 4.6 pmol/L Range: 3.1 - 6.8)

Free thyroxine 16.5 pmol/L Range: 12-22

Thyroglobulin Antibodies 246 kIU/L Range: 0-115

Thyroid Peroxidase Antibodies 126.8 kIU/L Range: 0-34)

She said she'd be reluctant to put me on levothyroxine as it may cause a problem to my heart, as I'm within the range and my thyroid is OK. I didn't argue, didn't have the energy. I thought yes, but what if I'm undertreated, won't that affect my heart eventually?

Following the excellent advice on this site, I've also started optimising my supplements and taking magnesium, D3, (Last NHS result May - Vit D 66 nmol/L)and using the Better You B12 mouth spray.

Really I'm just reporting that I did notice a difference with B12 injection and it might be worth pushing for one or getting one privately if that's possible. It seems such a simple thing with such positive effects. The GPs are willing to prescribe endless antidepressants and other drugs which must cost a lot.

I guess the next thing for me to try is GLUTEN FREE - gulp!

Thanks to all on this site for great advice on being our own advocates. If only it didn't take so much energy!

[J972]

Hi, just to say that some folks choose to self-source and self-inject B12. You can find out more on the PAS/B12 forum.

All the best

[jimh111]

I wonder if the B12 is treating your symptoms rather than a deficiency as B12 affects nerve transmission. It might or might not work in the longer term.Your TSH is a touch high but your thyroid looks fine. I doubt that your thyroid hormone levels would explain your profound symptoms, nor would taking a little hormone.

I had severe symptoms with a thyroid profile better than yours. I improved with levothyroxine but had to keep increasing it to high supraphysiological levels. After about a decade I worked out it was due to endocrine disruption. There are chemicals in the environment that affect thyroid hormone action in peripheral tissues but not in the pituitary. As a consequence thyroid blood test results are normal.

The science is very complex. To cut to the chase you can slowly eliminate these toxins by taking simeticone, a non-absorbable lipid. It is available as WindEze capsules, they are cheap and safe as they are not absorbed. Simeticone binds these forms of endocrine disrupting chemicals (EDC) and they pass through the gut and are eliminated. If you want to trial it you should try it for about three months or more as the elimination is very slow.

Your symptoms are much to severe to be explained by mildly reduced hormone levels.

[humanbean in reply to jimh111]

What is the dose for the WindEze?

And what form (oral suspension or tablets, and what brand/product) have you found best.

[jimh111 in reply to humanbean]

I just follow the dose on the packet and if it works reduce it a touch. I think the full dose is four capsules daily. I've used WindEze and Enterosgel gel, not much difference between them. The Enterosgel perhaps works out slightly cheaper but the capsules are easier to use, especially if you are on holiday.Simeticone is used as an anti foaming agent in endoscopy. If is a lipid that just passes through. Thyroid hormones and EDCs are continuously recirculated in the gut, they are both lipophilic, they stick to lipids. Since simeticone is non absorbable it will eliminate a small fraction. EDCs have very long half-lives, they build up slowly over time, so even eliminating a small amount will get rid of EDCs in time.

The idea of WindEze is that it is supposed to stop foaming in the gut and so help eliminate trapped wind in the gut. This is nonsense but it does mean we are able to buy a cheap means of eliminating endocrine disrupting chemicals.

[humanbean in reply to jimh111]

Thanks for the information. 👍

[SlowDragon Administrator]

With two NHS test results with TSH over 5, plus symptoms and high thyroid antibodies you should be started on levothyroxine

Standard STARTER dose is 50mcg

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

As you are on B12 you should also be taking daily vitamin B complex one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels between injections 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....

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

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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

I suggested my ferritin was still low at 56 but she said it was fine and that most women are around 56. But she did give me a script for more ferrous fumarate.

Yes it is still low

As vegetarian with Hashimoto’s you will find it very difficult/impossible to maintain optimal ferritin just by diet

likely to need to supplement regularly.

Never supplement iron without doing full iron panel test for anaemia first and 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 3-5 days before test

Medichecks iron panel test

medichecks.com/products/iro...

Low Iron implicated in developing hypothyroidism

healthunlocked.com/thyroidu...

[lisabax]

with an over range TSH, giving you thyroxine is likely to help your heart not cause problems! This doctor seems incredibly ignorant. Can you not see another one?

[Doris11]

Interesting about the B12 injections ☺️ you have hashis so why are not on Levothyroxine? Your TSH is high?

[Sleepysparrow in reply to Doris11]

Hi, GPs don’t acknowledge any thyroid issues as my NHS TSH results are always just ‘within range’. I’ve just got Chronic Fatigue Syndrome apparently-since 2011, despite great long list of symptoms. Hey ho. I’ve no doubt that my thyroid will ‘crash’ at some point in the future and then I’ll get Levo….and a further battle will begin 😱

[GlowCoach Administrator]

If your blood test today shows TSH above range I would begin to push for starting treatment with Levothyroxine. If this will be your first TSH above range on the NHS you may need to wait a further 3 months and retest to get the requirement of 2 TSH's above range.

Well done for making a start on vitamin levels.

Do come back to us when you have your latest results and make a new post.

[am111]

Your B12 tests, especially active B12 is not too low, but since you feel better with B12 supplementation, I don't think it hurts to take something like 1000-2000mcg/day oral B12. In my experience and some studies, cyanocobalamin is better than the methyl one. Also, most of the oral B12 clinical trials are with cyanocobalamin. Hence, I definitely suggest this oral. It may take more time than an injection for you to feel anything (probably couple of weeks), but will eventually work.

Your being a vegetarian is another reason to suspect a functional B12 deficiency despite a somewhat normal B12 test that happens with some people (your serum B12 is quite low).

[Fruitandnutcase in reply to am111]

I was very surprised (and interested) to read that you think that cyanocobalamin is better than methylcobalamin I always thought it was the other way round and I thought that was what was recommended on TUK.

Granted it’s a long time since I had Graves’ disease so things may have changed. When I did a finger prick blood test earlier in the year my B12 levels were good, I haven’t been supplementing for quite a while but in the past I’ve always used methylcobalamin.

[am111 in reply to Fruitandnutcase]

yes, there is the idea that methylcobalamin is directly used by the body while cyanocobalamin has to be converted, so methyl one is better. However, please see this:

ncbi.nlm.nih.gov/pmc/articl...

In my experience, methyl works faster but the effect tapers off after a while. On the other hand, cyanocobalamin starts slowly but picks up really well after some time. The reason might be that cyanocobalamin takes time to get converted and hence provides a much more smoother "active B12" input into the blood than methyl.

[Fruitandnutcase in reply to am111]

Thank you for that. It’s really interesting isn’t it.

[Sleepysparrow in reply to am111]

Thank you. I feel I’ve climbed a few rungs up the long ladder of recovery or at least finding out what helps.

[Mixteca]

If you want to test for PA/B12 deficiency, I urge you to post on the PAS forum for further advice. You can have a functional deficiency, even if serum is within range, it's much more complex than checking numbers. Good idea to test for PA before supplementation or injections as it's your best chance of getting a diagnosis.

A trial of B12 injections isn't once every 3 months. You'd need regular injections over a much shorter timeframe. The PAS forum can advise.

Your ferritin is low and warrants a full iron panel to get a better clinical picture. The thing GPs never do is look for the cause of deficiency, whether it's lack of absorption or something else. Good luck!

[Sleepysparrow in reply to Mixteca]

Thanks 🙏🏻 I feel I’m lucky to have been given the injection by my GP as she said I’m within the range and my ferritin is now OK! And she’s put me on repeat prescription for an injection every 3 months. I agree, this isn’t enough. But it’s a start. I’ll feed back to her how much my symptoms improved- brain fog and ability to walk, etc, and see what happens. I’m also investigating a private interim B12 injection. The info on the PAS site is great. It does seem like it’s a long and difficult process to get a diagnosis. Perhaps this is STEP ONE? I guess a further test now would be difficult as I’ve had the injection a week ago? Thanks for your help. 😊

[Mixteca in reply to Sleepysparrow]

You're welcome. You have to consider the fact that GPs aren't trained in biochemistry and actually know very little about vitamin deficiencies, best post on the PAS forum where people know what they're talking about! If you do all of the relevant tests now, either through GP or privately, it need not be a long, drawn out process, as it tends to be. There are a range of tests for PA, not just B12, which are best done at the beginning. 😉

[klr31]

You need thyroxine. Your results are not within range.

Karen