Advice please?

[B12jab]

Hi I’m looking for advice please,I have been feeling in for a long while now I had My thyroid checked at doctors and told all normal no action,but I posted my red in here and was told my t4 was low at 12 so I paid for the full thyroid panel with medichecks the results have come back today I’m not entirely sure to the findings is it Hashimotos? And what do I need to do now? Many thanks Claire

[Diane17884]

Hi Claire, yes it seems to be hashimoto's. I'd go back to your doctor and explain then ask to be tested to get an official diagnosis. That way they can keep an eye on your levels and take it from there.

[B12jab in reply to Diane17884]

Thing is I had to pay for these tests as they don’t do all of them on nhs so I’m concerned as to what I can do now? It’s all a mindfield x

[Diane17884 in reply to B12jab]

The NHS usually test TSH, FT4 and TPO antibodies, I'd definitely make an appointment and take along these results as your thyroglobulin antibodies are above range so they may be willing to test this. I'm sure someone more qualified to help will be along soon but I'm sure this indicates hashimoto's. Not everyone will have high TPO x

[B12jab in reply to Diane17884]

Yes that’s it I had the tpo and it was normal with nhs tests, so I take it to my doctor do I ask to be referred? X

[Mary-intussuception]

I would ask to be referred to an Endocrinologist.

I would also ask your GP to send you for an Ultrasound scan of your Thyroid while you wait for the Endo appointment to come through.

Ask GP to test levels of Vitamin D, B12 Folate and Ferritin also.

It was my TPO result that was raised (300). Don't remember if I had Thyroglobulin tested. Not sure but think this could mean other things as well. But, if I remember correctly, have read on here that raised Thyroglobulin is also an indicator of Hashimoto's.

Thing is, on this occassion your Thyroid function tests results are quite good! FreeT4, FreeT3 and TSH.

However , with Hashimoto's the Thyroid Function Tests results can fluctuate - and you say you had a 'low in range' result of just 12 with your GP test. Typical of Hashimoto's ??

Has your GP done any other blood tests? Have you had FBC, Kidney, Liver & Bone tests? Have you written a list of symptoms to show GP?

Hope you succeed in getting the scan and referal.

[B12jab in reply to Mary-intussuception]

Thanks so much for your reply,my b12 was 280 last test I had manage to get the loading doses form my doctor but he refused anymore as I was within range so I started self injections I haven’t had one now for two weeks as I wanted to be free if b12 for blood tests ,my ferritin was 10 in August it went up to 39 but had dropped again to 31, my mcv has been high also I’m so worried about this thinking I have somthing awful as I feel unwell,medichecks did mention Hashimotos in their report with the findings x

[Mary-intussuception in reply to B12jab]

OK, I didn't see the mention of Hashimoto's on the report.

I would take a copy of your results report to GP with a list of all symptoms. Ask for the referal and scan.

Also ask for testing for Pernicious Anemia and a referal to Haematology.

Have a look on the Pernicious Anemia Society forum. You could also call their helpline. I think they can help out by contacting your doctor (if you want them to) not sure if you have to join though. But you could put a post on their forum re B12 and show Thyroglobulin & other results.

Have you ever been tested for Coeliac Disease?

[B12jab in reply to Mary-intussuception]

I had the intrinsic factor and it was negative,I’m waiting for MMA tests results, I know my b12 is t great or optimal but it’s so difficult to get any where with doctors when within range my doctor is referring mento a heamatolgist as I asked him to ,I will be making an appointment with him regarding these findings,yes I have been tested for celiac all normal x

[Marz in reply to B12jab]

Ferritin is very low - around 70 is good for thyroid. A full Iron Profile needs to be done to rule out anaemia. B12 takes months to reach a base-line so testing whilst supplementing is of very little value. One negative test for IF anti-bodies may not be enough ... as the test can be unreliable. Hope you soon find some answers ..

[SlowDragon Administrator]

NHS can be reluctant to diagnose autoimmune thyroid disease (Hashimoto's) on just high TG antibodies

Thyroglobulin antibodies can be high for other reasons, or none, or Hashimoto's

See this link

healthline.com/health/antit...

So you may struggle to get diagnosed

You need vitamin D, folate and ferritin tested if not been done

[B12jab in reply to SlowDragon]

What other conditions please I’m so worried?

[SlowDragon Administrator in reply to B12jab]

All listed in that link I added. Did you read it

Pernicious anemia, Hashimoto's , arthritis, diabetes, etc or some people have high TG antibodies for no obvious reason

High TPO antibodies give more straight forward Hashimoto's diagnosis

Getting vitamins tested is next step

[B12jab in reply to SlowDragon]

My b12 was borderline low at 265,280 I did start self injecting but have not had an injection for two weeks as I wanted to have my RBC folate checked, and MMA my intrinsic factor was negative also x

[B12jab in reply to SlowDragon]

It says cancer😰😰

[SlowDragon Administrator in reply to B12jab]

Not likely at all.

Most likely Hashimoto's with your symptoms, or arthritis or no reason at all

Getting vitamin D, folate and ferritin tested next step

Aching joints often low vitamin D

[B12jab in reply to SlowDragon]

My Vit D is 75 apparently good, I’m waiting for RBC folate results my serum folate has been good,and my ferritin is now 31 it was as low as 10 in August then went up to 39 x

[SlowDragon Administrator in reply to B12jab]

What's the range on ferritin result?

Did GP run full iron panel?

Were you prescribed iron supplements?

Vitamin D, many find it's better at least around 80nmol but may be better slightly higher around 100nmol

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Recommended on here that if having B12 injections that Supplementing a good quality daily vitamin B complex as well can be beneficial

A vitamin B complex with folate in not folic acid may be beneficial. B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

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 tried strictly gluten free diet?

Many find this brings enormous benefit. Can reduce joint pain

Ideally do blood test for coeliac disease first, either buy online under £20 or ask GP to test

Assuming coeliac result is negative then you can try strictly gluten free diet 2-3 months, see if it helps, then stick with it. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

It does need to be absolutely strictly gluten free to be effective

Only make one change or add one supplement at a time and wait at least ten days to assess each time

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

[B12jab in reply to SlowDragon]

Thanks so much for your reply ! I had celiac test recently and normal , my ferritin was 31 last test ranges are 11/307 b12 was 280 last test ranges are 175/900 my heamaglobin is 127 I am taking bcomplex yes with injections but I’m wary in taking folate and not folic because I have severe anxiety x

[Mary-intussuception in reply to B12jab]

Had you been eating lots of bread or pastry etc ie plenty of gluten before celiac test

[B12jab in reply to Mary-intussuception]

I’m not too sure should I have?

[Mary-intussuception in reply to B12jab]

Yes, otherwise test might give a false negative.

I wasn't told when I was tested for it. So no warning given about eating gluten pre- test.

[B12jab in reply to Mary-intussuception]

So il eat some bread beforehand?

[SlowDragon Administrator in reply to B12jab]

So you can consider trying strictly gluten free diet

It can be helpful in improving vitamins, or rather can improve gut function so that vitamins don't drop so much.

It may be that gluten is causing joint pain. The only way to know is to try it

The difference between folate and folic acid

chriskresser.com/folate-vs-...

[HashiFedUp]

Your antibodies are high indicating you have an auto immune attack. Your thyroid scores look normal so it might be some other immune problem. Maybe experiment with T4 to start with. Have you any pain anywhere? Muscle aches or joint pain? What age are you? Any other symptoms? When you say “awful” what do you mean? : )

[B12jab in reply to HashiFedUp]

Yes I do have achey joints I’ve just felt so fatigued weak just horrible and now my anxiety it’s resllt bad as I’m worried this result is something sinister what else could it be?

[Mary-intussuception in reply to B12jab]

The worse thing we can do is worry about what 'it' is and whether or not it is something sinister.

Lots of symptoms can come from exhaustion - and / or malnutrition.

If symptoms don't settle with rest and good food and drink (plenty water) then I would keep going back to GP.

It can take several visits about the same symptoms for them to respond.

[B12jab in reply to Mary-intussuception]

Thank you I will try the gluten free diet is there anything else that should be avoided? And foods that are good?

[Mary-intussuception in reply to B12jab]

Maybe you should enquire about another test first - if having a test then keep eating gluten.

But I would seriously consider taking a break and catching up on some sleep. A few early nights.

[B12jab in reply to HashiFedUp]

I wouldn’t self treat with thyroid meds I’d be far to scared to do that

[Caroline888]

Hi,

I’m no medical expert but have never seen that high TG antibodies indicate anything other than autoimmune disease, specifically Hashimoto’s. I don’t think you need worry about it being anything sinister. My TPO antibodies were more than 1300 at diagnosis. I also had high TG antibodies when last tested. I have Hashimoto’s.

As HashiFedUp has said, your thyroid hormone levels are good but if you are symptomatic it might be a good idea to have other blood tests to check that you are not anaemic.

Any particular worries you have should be mentioned to your GP. After all, that’s what they are there for!

All the best

Caroline

[HughH]

TSH is not a thyroid hormone. It is produced by the pituitary gland and travels in the blood to the thyroid gland where it signals to the thyroid gland to produce more thyroid hormones. A TSH is in the higher part of the normal range or above range could indicate hypothyroidism.

The most common cause of hypothyroidism is Hashimotos.

Thyroxine (T4) is a thyroid hormone but is not an active hormone, it needs to be converted to T3 to become active. Your Free T4 is in the middle of the normal range which is good.

T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms. Your Free T3 is above the mid point of the normal range, which is good, so you should not have hypothyroid symptoms.

As you are still having what appear to be hypothyroid symptoms, one possible cause is a genetic condition: Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It causes hypothyroid symptoms and requires very high T3 levels (often above the top of the normal range) in the body to overcome the resistance.

As it is genetic if there are other family members with thyroid problems, fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease or depression this would further support this possibility. Even if you cannot identify any family history of this it is still possible that you have this condition.

[B12jab in reply to HughH]

Goodness me! How is this diagnosed please I sen to be going from one thing to the next I’m exhausted mentally with it all! X

[HughH in reply to B12jab]

It is very easy to end up trying one thing, then another and ending up going round in circles. It is important if you want to restore your health to build up a good knowledge so that you can make informed decisions.

Do you have any family history of the conditions I mentioned in my previous reply?

[B12jab in reply to HughH]

Well I defo have some depression I know this I was in antidepressants fron15 years but had to stop in August asnmy cardiolgist found I had a very slight prolonged qt interval,he said I’m not telling you to stop your Prozac but I do not want you to take anymore as it could cause problems,of course I stopped as I was so afraid ! and I have crushing anxiety! I was told I had fibromyalgia a long time ago but rheumatologist was vague I basically had to ask him to tell me I had it! And I’m in waiting list for chronic fatigue where they assess you I think I should sleep al day have no energy,and I do sleep when I can in the day I’ve had days where I do the school run come home and sleep all day until pick up,it’s been terrible this year ,I also have mitral prolapse prolapse,my son has type 1 diabetes which feeds my anxiety as I worry so much about him, my aunt has pernicious Anemia and my Nan had it also in the last year of her life,my cousin has just been diagnosed with under active thyroid x

[HughH in reply to B12jab]

Your family history makes Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance) a real possibility. I will send some information by personal message.

[Mary-intussuception in reply to B12jab]

Would you consider taking a rest for now? Come back to researching when rested ??

[LowB12]

Couldn’t see if you had had B12 tested?

I’ve recently been diagnosed with Hashimoto’s but no treatment as in range...

Family history both sides of hypothyroid, maternal of other blood & autoimmune disorders..,

I was getting more anxious, increased claustrophobia, brain fog, tiredness etc etc.....B12 only just in range & below previously. Have started self injecting & improved a lot of my symptoms. If not had tested then request they do, along with iron levels, folate & intrinsic factor antibodies....if B12 or related then treatment potentially straight forward & will feel a lot better.

Often diagnosed with other conditions such as chronic fatigue but B12 levels may be the cause