Thyroid UK
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Endocrinologist

I actually can't cope anymore my neck is so swollen up I can barely sleep at night. I keep waking up choking and feeling as though I am being strangled.

I've been signed off work due to ailing health as I have other fatigue and muscle weakness going on so as I work in a moving and handling job I'm no longer allowed to be there with my legs giving way sporadically.

I've been referred to endocrinology and rheumatology......I've called them and they can't tell me the longest I'll have to wait.

Anyone been to them be able to tell me how long they waited for routine?

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You previous post showed BELOW RANGE B12

healthunlocked.com/thyroidu...

You also need folate tested, as this works with B12

Vitamin D and ferritin need testing too

Make an appointment to see GP early as possible and get full testing on these. If B12 remains low you will need B12 injections

Low vitamin levels stop Thyroid hormones working

Do you have Hashimoto's? Also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Can you see if you have had both TPO and TG thyroid antibodies tested and add results

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My folate was 5.8 normal range (2.4-20 )

I can't remember my antibodies results but apparently it's done in a different lab and I didn't get it with other test results but I can request these

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So folate is low and B12 is below range

Your GP should be testing and most likely offering B12 injections

Gambit62 may be along to offer advice

As you have Hashimoto's then low vitamin D and ferritin are more likely

Ask GP to test both

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first and vitamin D and ferritin testing

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

You do need any gut symptoms at all, gluten free can still help.

Needs to be strictly gluten free (not almost gluten free) Trying it for 3-6 months, if it helps stick on it

Ideally retesting thyroid antibodies after been gluten free some months to see if have they have fallen. Many find they do

Just don't be surprised if GP or endo dismiss the concept

If you search gluten free on here you will see literally 1000's of posts

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Oh also I did get told I had autoimmune thyroiditis it's why I've been tested for other autoimmune issues

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please feel free to post on this forum for more support on B12

healthunlocked.com/pasoc

also take a look at the pinned posts.

Your blood work isn't showing any signs of macrocytic anaemia and your GP may be using this as an excuse to rule out B12 deficiency despite the low levels. Macrocytic anaemia isn't present in 25% of people first presenting with B12 deficiency.

You do seem to have signs of microcytic anaemia which implies that your iron levels may not be good - despite the in range ferritin - ferritin is just one measure of iron so would be advisable to look at a full iron panel to see what is going on.

You should be on loading shots for the B12.

Refer your GP to the BCSH standards on diagnosis and treatment of folate disorders which you can access here but they can access through the BNF

onlinelibrary.wiley.com/doi...

There is a high correlation between hashis and PA - 40% of PA patients seem to go on to develop hashis and studies in the other direction - Hashi's patients developing PA - vary between 10% and 40%

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Was literally diagnosed with pernicious anemia on Thursday. I've had loading injections but not feeling better yet tbh I feel like I've got worse early days though

I am a bit confused by my iron results though. I was on supplements when I got the second full blood count n went from being told I'm anemic to I'm not n was taken off iron supplement.

My drs are so vague with me I'm confused with what's going on

I don't understand how 5.1 is normal iron levels (test says 14-39)......but they wont explain anything

Saturation of iron is 10.6%

TIBC was 48.1 (normal is 45-80)

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sorry but I can't really follow the results you are quoting - and if there were two sets of blood results it would be necessary to look at both - anaemia takes a few months to clear. There are a lot of different measures for iron levels - may be that they were low on the first test but have improved in the second to a point where iron supplementation is not necessary - and you can have too much iron. However, the only person who can really answer is the doctor who stopped the iron supplements.

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They didn't test my iron again so I have no idea what that's at after supplements.

I had been on supplements between tests for 2/3 months.

Dr basically just shrugged his shoulders when I asked what it all means and he just repeated I'm not anemic. I asked why my iron is so low at 5.1 and he just said it must be your normal range......I then asked how can that be seen as normal and he just shrugged again. Its probably because I don't understand I'm finding it difficult to explain myself

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you could ask for a referral to a specialist - or ask to speak to another GP at the practice - or write asking for an explanation of the blood tests and answers to specific questions - copy to the practice administrator (and to PALS)

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Thank you. I am hoping to see another GP. Bit worried that wouldn't get me anywhere as he was meant to be the good one!! Just seemed to be like he didn't care and made me feel so small. I was in bits over the PA diagnosis just because in a short space of time I've been diagnosed with 2 autoimmune conditions (part of me can't help but think what else I'll get diagnosed with) and doesnt help i feel so run down.

I didn't realise I could do that with PALS and practice administrator thank you

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Hashimotos and PA is a very, very common combination - I was diagnosed with B12 absorption problems in 2012 - not specificially told it was PA and given very little information about what B12 deficiency actually meant - please do take a look at the links on the PASoc forum. 40% of patients with PA go on to develop hashimotos and studies show between 10 and 40% of hashis patients going on to develop PA.

To be honest PA is a lot easier to treat and manage than hashi's - though GP understanding of the condition is appalling so it is often chronically undertreated.

Totally empathise with the worry about other auto-immune conditions but to be honest you can only take things one day at a time ... I sometimes feel that my body is trying to kill me so who am I to argue with it. It took me 18 months to find out enough about PA to really understand what is going on there - there are some good books - but it is quite scary in terms of dealing with GPs who just don't understand which is, unfortunately the majority - being told I had hashi's was a really bad blow and the treatment I was put on initially really didn't suit me - just about coping now on 100mcg of levo but that hasn't been with help of GP - just put my dose up by increments and they haven't twigged to the fact that they are prescribing more frequently - will have to come clean when the medication review is due which should be around October time this year.

Rest assured that you are far from alone. Both conditions are relatively common and the combination is quite common ... and people do lead quite normal lives. In fact, for me getting to treat my PA resolved issues that had been making my life hell for decades.

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Sorry to hear that Gambit62. I appreciate all the advice though. Do you mind me asking how you feel now the PA is sorted? Do you find the increased dosage helps with hashimotos?

Tbh that's how I feel atm like my body is just failing me - I'm unable to do a lot of stuff I could do and it's made me feel useless (as I've been told I'm not allowed to work temporarily til it's sorted - my job is physically demanding)

I'm on 100mcg levo as well.....but my neck is swollen thanks to the goitre actually feel like my neck has a rubber ring around it. But yknow my thyroid results come back as normal so Dr refuses to change dose until endocrinologist.

The OH dr deemed me unfit and said even if I had PA (at that point I was undiagnosed) he believed all my physical problems are due to lack of sufficient treatment for my hashimotos.

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I was diagnosed with PA first. To be honest having PA means you are likely to need higher doses of levo as you won't absorb it so well - taking it with something acid may help.

I was started on far too low a dose of levo so reacted really bad to it.

I had no energy and was suicidal on 25mcg (lasted about a week before I went up to 50mcg after GP not being interested in looking at medication - just signed me off for a week). I could just about manage to get up on 50mcg but mood was very low. Mood started to improve on 75mcg but I would still run out of energy and was very breathless - wasn't until I got to 100mcg that I actually had energy to do things - surviving on that - wondering about trying 112.5mcg and seeing how that goes.

It is frustrating that GPs don't realise that being back in normal range on TSH isn't enough on which to base a decision on treatment and that they really need to talk to their patient and at least ask them how they are feeling. I did a lot of reading up around treatment and got some support from this forum.

I stopped taking levo in the morning quite early on as it would totally make my energy levels crash and actually take it in the middle of the night - when I wake up to go to the loo or get woken up by the cats wanting their midnight feast (they have me very well trained :)).

We are all individuals which means that levels that are right for us vary a lot. Normal range is where most people are okay but that doesn't mean that a specific point in that range means an individual is okay. Most patients on levo seem to report needing levels towards the lower end of the scale to function properly ... particularly if they are looking only at TSH which is a secondary measure rather than a primary measure of thyroid function (hormone produced by pituitary gland in response to hormones produced by the thyroid). Yes levo, T4 is being replaced but just using TSH doesn't tell them if it is being replaced in the right quantities ... there are similar logical problems with the use of serum B12 in managing PA as treatment with shots introduces a factor that moves where most people feel okay.

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I don't know when's best to take the levo for me memory wise first thing in the morning is easier for me. Dunno how it affects my levels though.

I doubt I'd remember if I had to take it another time.

😂😂 Cats are good at waking us up for food. My two however wake me up in the morning not during night so that wouldn't work for me.

The whole TSH/t4/T3 thing kinda confuses me too but as you say most drs just go by TSH

The 'normal' range doesn't help me as I feel exhausted 24/7, have physical issues that maybe either thyroid or PA related and this rather sizable goitre.

I will take what you've said on board just hope I can get fixed up soon sick of feeling physically done in

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