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My immune system rubbish - GP cannot help. Can anyone recommend an alternative practitioner in C London who can take an overview?

9 replies

Preminstreltension · 21/09/2015 10:44

So I've always been someone to go down with every little thing - I don't seem to fight off bugs like other people (despite fairly healthy lifestyle, never smoked, hardly drink, eat ok, lots of sleep). And it seems I'm getting worse.

Since January I have had two entire weeks off work for two separate episodes of what is effectively a cold just taking hold and making everyday life almost impossible - shocking sore throats so I wake up in the night to have painkillers, solid sinuses so talking becomes difficult as I am so congested, chest infection, exhaustion. I am now in week three of this latest bout. I had last week off work and am now on antibiotics in case it's sinusitis but I'm not really feeing better. Lots of members of my family picked up the same bug and had horrible sore throats for a week but are now basically fine and I'm still a wreck. A version of this happens to me several times every year - between times I'm basically fine.

I have the worst sickness record in the firm (and I own the firm!) ...

I've asked the GP but he says there's no reason for it. Basic bloods come back ok (I was low in iron but have slowly built that up thanks to supplements and mirena to regulate periods so it's fine now). I'm also hypothyroid but again all my levels are ok.

Someone at work suggested I see someone with an alternative approach. I'm not really into that stuff but it seems the GP can't help and I have to do something as this is not normal. Can anyone recommend an approach or a practitioner? A few years ago I spent a fortune at the Hale Clinic who did loads of bloods but didn't really come with any solutions.

OP posts:
AttilaTheMeerkat · 21/09/2015 11:15

Never accept a bland "these are ok" with regards to thyroid issues. How is your hypothyroidism currently being controlled?.

I wonder if you are still low in iron?.

I would change GP practice if GP is unhelpful; its far easier to do that these days. I would try and get referred to someone like an endocrinologist as it is clear your GP has no real idea as to how to deal with your ongoing health problems.

I would steer clear of alternative stuff for now as natural does not always mean safe. It can cost a lot of money for no good result.

Pleasemrstweedie · 21/09/2015 11:29

Never believe anyone who says your bloods are ’OK’ until you have seen the evidence for yourself! This is doctor-speak for within the reference range, and has nothing to do with levels of anything being optimal.

You are hypothyroid and have been iron deficient. Chances are your iron is still a bit dodgy and you have other vitamin and mineral deficiencies and well, including perhaps vitamin B12, vitamin D and folate. This is all part of the picture of hypothyroidism.

It would be worth getting a print out of your blood results, with the reference ranges.

You are looking for:

TSH (if above 2 needs further investigation)
FT4 (needs to be in the top 25% of the reference range)
FT3 (as FT4)
Ferritin (needs to be at least 70 and preferably 100 to support biochemical processes in the body)
B12 (needs to be above 500 to prevent neurological symptoms)
Folate (needs to be around 20)
Vitamin D (in this area needs to be over 75, otherwise treatment required)

Preminstreltension · 21/09/2015 12:54

OK this is all really helpful. I am actually going back to the GP to push for a referral on Friday but will ask for the whole print out of bloods and might actually reproduce them here for comment from knowledgeable people.

My ferritin had gone down as low as 9 but since the mirena and iron supplements for three years, it's back up to over 70 I think. TSH is now below 2 and I seem to remember FSH about 19. The others I don't remember. I clearly need more testing and potentially more supplements.

OP posts:
claraschu · 21/09/2015 13:12

My daughter went to Dr Franziska Meuschel in London for help with CFS/ME. She did very detailed blood tests (nothing like the NHS ones) and stool tests, took a tremendously detailed medical history, and gave us a 90 minute appointment.

Dr Meuschel then offered very specific help, which I credit with curing my daughter's serious illness. The doctor was absolutely wonderful, and I would definitely go to her again for the sort of chronic problem which the NHS seems ill-equipped to deal with. The tests were expensive and it took weeks to get an appointment with her, but it was so worth the money and the wait! Dr Meuschel also gave us an initial phone consultation, to figure out if she could help us, which was already thoughtful, honest and helpful.

goodasitgets · 01/10/2015 02:06

Make sure your white cell count is ok. I have been constantly in and out the doctors with colds that don't shift, chest infections, tonsillitis. Kept being told bloods all fine, normal etc
New doctor did a routine blood, trawled back through every blood test I have ever had (a lot!) and found I'm neutropenic with a v low white cell count. Now under haematology, hopefully get my results on Tuesday

RubySparks · 01/10/2015 02:42

I am hypothyroid (hashimotos so autoimmune). I also have coeliac disease so now on a gluten free diet. Before going gluten free I had some really bad colds which turned into chest infections that took ages to shift (and sometimes needed antibiotics). Might be worth checking as autoimmune conditions tend to occur together.

Calliou · 02/10/2015 15:01

I was also going to say coeliac disease. I had real trouble with prolonged illnesses before diagnosis.

Preminstreltension · 13/10/2015 09:40

Thanks for all the suggestions. I have just had my bloods back from the drs and almost everything is within range. I almost feel embarrassed to have had all these tests and almost everything looks good. There are a couple of tiny out of range items but GP is not concerned. He was intending to redo the immunoglobulin M in 6 weeks just to check that's going in the right direction but has actually agreed to refer me to an immunologist just in case there's something else that can be tested. He did take me really seriously, particularly when I said I consistently have more sick leave than anyone else in my firm. That's obviously a trigger for them - ability to work! Anyway, he took me seriously and is thinking there might be some sort of allergy or inflammatory component and this does run in the family.

Re coeliac disease, I had never thought of that but will look into it. Would I not have any other symptoms though? The only bit of me that seems to work well is everything to do with digestion and I would have thought I would have other symptoms if coeliac?

Anyway, I've reproduced all the blood tests here in case anyone has any insights. Sorry it's so long but there is a lot of knowledge3 on this board and any thoughts would be very welcome, even if it's just "you're very healthy, shut up and go away!":

Haemoglobin A1c 33 (20-42)
Serum protein electrophoresis normal
alkaline phosphatase 62 (30-130)
bilirubin 9 (0-21)
calcium 2.35 (2.15-2.6)
total protein 72 (60-80)
globulin 36 (19-35) **above high ref level
calcium 1.26 (0.8-1.5)
inorganic phosphate 1.26 (0.8-1.5)
albumin 36 (35-50)

folate 3.3 (>2.7)

TSH 0.37 (0.3-4.2)
free T4 18 (9-23) (I am on 175 mg of thyroxine daily)

transferrin saturation 29% (16-55)
ferritin 87 (10-120) (this is after three years of iron supplements and the mirena coil as this was as low as 9 at one point even with supplements but the mirena has fixed it)
iron 17 (7-27)
serum transferrin 2.3 (1.7-3.4)

vit D 95.8 (70-150) (I take supplements)
B12 484 (160-800)

sodium 140 (133-146)
potassium 3.7 (3.5-5.3)
creatinine 56 (55-110)

Haematocrit 0.419 (0.35-0.45)
mean cell volume 87.8 (83.5-99.5)
mean cell haemoglobin 29.1 (27.5-33.1)
white blood count 5 10^9/L (4.2-11.2)
red blood cell count 4.77 (3.73-4.96)
haemoglobin concentration 13.9 (11.4-15)
mean platelet volume 10.3 (7.4-11.5)
neutrophil 2.91 (2-7.1)
lymphocyte 1.5 (1.1-3.6)
mean cell haemoglobin concentration 33.2 (31.5-35)
red blood cell distribution width 13.2 (10-15.9)
platelet count 178 (135-400)
monocyte 0.3 (0.3-0.9)
eosinophil 0.2 (0-0.5)
basophil 0 (0-0.2)

immunoglobulin A 1.52 (0.8-4)
immunoglobulin G 14.6 (5.3-16.5)
immunoglobulin M 2.77 (0.5-2) *above upper reference level.

OP posts:
Pleasemrstweedie · 13/10/2015 10:05

You are now in the realms of fine tuning.

Your FT4 is only just over mid-range, which suggests your FT3, which they didn’t test, may be lower than it ought to be. You may need more, or different thyroid meds, but you won’t know that unless you get your FT3 tested. The NHS has a mental block about FT3, which is actually the most important thyroid test, but if they won’t play ball, you may need to get it done privately. Get on one of the thyroid forums for advice re private testing.

Your ferritin is now looking good, as is vitamin D, but you will need to keep an eye on both of these and keep them at least at those levels.

Vitamin B12 is too low. Some say it should be over 500, others, including the pernicious Anaemia Society, say it should be over 1,000. You might want to supplement with Jarrows sublingual lozenges. Get them from Amazon. 1,000mcg a day should do it. B12 is water soluble, so what you don’t need, you’ll just pee out again.

It looks as if there is something going on with globulin and immunoglobulin, but this could be as simple as an incidental finding or a reaction to infection, which is where we came in.

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