Hi just wondering whether anyone who has issues with their thyroid can advise whether having higher than normal platelets and a lower white cell count in blood tests could be significant.
I also have low blood pressure usually around 90-100/50-60
Both of the blood tests are always abnormal but not by a significant amount to warrant further investigation as the GP never contacts me afterwards. I once asked about the platelets to be told that it was normal for me and that I might be fighting off an infection, well I must have had it for years now
I have coeliac disease so it could be my spleen doesn't work as well as it should
I haven't been diagnosed with thyroid issues, but because I don't feel very well despite being diagnosed with CD in 2011 and sticking to a GF diet and cutting out a lot of other foods, I keep wondering whether there is an issue. Other indications are thin hair, muscle cramps, headaches, weakness in my joints.
I keep looking into it but my results show I don't have it. My TSH results at the GP's since 2012 have fluctuated between the highest at 2.9 in 2019 to May 2021 at 1.0, the range is 0.35 - 4.7
In 2018 on a private test at Blue horizons the
TSH was 3.27 range 0.27 -4.20,
T4 total was 69.0 range 66-181
Free T4 13.70 12.0 - 22.0
Free T3 4.01 range 3.1 - 6.8
Immunology
Anti Thyroidperoxidase abs <9.0 range <34
Anti- Thyroglobulin abs <10 range <115
I did post the results on here before, (although I cant find my previous post ) and people advised me to go to Thyroid uk, I did do this but the private practice doctors list they sent was too expensive for me to use.
I did mention the results to my GP who told me that they wouldn't be able to help me as my tests show I am within the normal range.
Thanks for any help you can provide
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tmoxon
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I'll be interested to see what replies you get. My platelets were always mid-range then suddenly for no reason I can identify they jumped up to being high in range in about 2016. In 2020 they jumped up further to being over the range (about 120% - 125% of range).
I've never worked out the likely cause for myself, but this link may be useful to you.
My white cell count has also gone high as well, unlike yours. And my blood pressure is "normal" but does have a tendency to jump up every now and then.
I suspect I have a minor infection somewhere, but I don't know where.
Since you have coeliac disease and have done for some time, and have been eating a restricted diet as a result, it is possible you have some low vitamin and mineral levels. If you can get any nutrient levels tested you could report your results and reference ranges in a new post and ask for feedback.
I forgot to mention one of the main symptoms I have which is fatigue. Often in bed by 9pm.
I have just had a quick look at the links you sent to me and thyroid is mentioned but in general as a auto-immune disease which CD is as well.
I think both mention the spleen and bacterial infections and I almost died at 9 when I went to hospital with really bad pneumonia so whether they are connected and I am barking up the wrong tree and its my spleen that is causing my issues I don't know.
in regards to the vitamin and minerals I do take supplements, I am taking magnesium baths and using oil as I was up out of bed 2 or 3 times with calf cramp, I have prescribed vb12 tablets, had a test and was in the range albeit low. When I was first diagnosed with cd I had zinc tablets but asking the GP for tests like these nowadays is difficult.
I was under investigation for stomach issues last year and mentioned the bloods to a young gastro, he said he would send them over to haematology, went back saw another consultant and forgot to ask him about them
My stomach issues are a lot better as I ended up having a York Test and yeast was causing a problem, I don't eat many gf flour foods and take prebiotics every day and it has helped
Thanks again
Hi did you ever get this resolved? My thyroid readings are similar to yours also low blood pressure and low white cells,have gi issues and extreme fatigue. Gotten much worse heart issues feel like I'm dying a lot of the time. Did you ever find out what was causing you issues and are you better now? Also what was your iron/ferritin like?
So sorry to hear that you feel so poorly. As far as I am aware I don't have any heart issues.
I am sorry but no I didn't get any further in finding out if I have anything other than coeliac disease wrong with me. Although this post is in the thyroid section I have never been diagnosed with thyroid disease.
I think I had coeliac disease for at least 25 - 30 years before diagnosis, I could be wrong but I think my body was fighting it for so long it causes other issues, but I am just guessing. Have you been tested for CD with your stomach issues?
My iron is always on the low side, but not low enough to be flagged up by the GP ( lowest was 27 and I got up to 65, I think this is when I was on iron meds. The range was 15 - 300. When I did mention about it being low I was give iron tablets. I have just started taking Adcal and ferritin again the last few weeks.
The other thing that has happened is I don't seem to be able to drink more than a very small amount of alcohol without feeling extremely ill for days afterwards. I go to bed, feel very hot and have a migraine. I used to love a glass of wine with my meal or when going out so really miss that. I only mention it in case it turns out to me another piece in the puzzle.
Yes you sound exactly like me, I've not been able to drink alcohol for years. Finally got a celiac test waiting for the results, if I do have it I've also been left for over 20 years being told it was IBS. Like you it seems my body has been fighting something, an autoimmune inflammation kind of response and I've finally got so ill something had to give. The ferritin range levels are ridiculous considering you have to get it to at least 50 to stop hair loss, which I've also suffered with 20 years. The low ferritin levels show we are iron deficient (stage 1) they only bother to mention that if it then goes into stage 2 which is iron deficiency anaemia shown by low serum levels. Low ferritin causes terrible symptoms and has an impact on every system.it's a disgrace they ignore this fact and tell people 'all is normal ' when it's not and it would have been an easy fix. Been robbed of my teens,20s and had my 30s, was laughed at when I asked for a celiac test 15 years ago . Only recently discovered about ferritin after trying to decipher my bloods and why I am so I'll because no one else bothers (GPs!)
Hi you saying that you have lost many years of your life really resonates with me, that sums up exactly how I felt and still feel, it can make you a bit bitter and you feel so desperate to get to the bottom of it all. I have good and bad days now.
When I first went to my GP about my stomach issues, I thought I had h pylori, they did test me for this but no one thought to test me for coeliac and I had never heard of it. I remember the family GP advising me not to eat too fast ( I had complained of wind)
Around this time I went with a skin condition where small itchy blisters were appearing mainly on my elbows and knees, I had this for years and its only when I got my cd diagnosis that I found out it was dermatitis herpetiformis. In hindsight I was given Betnovate which didn't help, I should have asked to see a dermatologist but I didn't, I just put up with it. This was my early 20's and I was 49 when I got diagnosed and that was a fluke, I had gone to an immunology clinic and the doctor blanket tested all patients for coeliac.
I also suffered hair loss in early 20's and 30's. I recall taking a plastic bag of hair up to the doctors to show just how much I was losing in one hair wash. This was way before the cd diagnosis and I was never offered any iron, I cannot recall whether they tested me for it as its so long ago.
The other symptom I had was asthma, it was awful in the summer months or if I had a cold, I was given steroids when it was bad. I remember telling the doctor I felt great on the steroids and thinking back it was probably due to them dampening down my immune system. I only get asthma now if I have a cold, it has improved a lot since going gf.
I am mentioning all of the above in case it rings any bells with you
Yes it all started with GI symptoms, hair loss extreme fatigue. Have to say haven't suffered with my skin or breathing but do get a sort of cough like Im trying to clear my throat in the summer and never can. Glad you finally got a diagnosis but its disgusting you were left so long. Did they ever do an endoscopy to determine the damage? Guessing my stomach villi will be flat and stomach lining damaged beyond repair. I also have other automimmune illnesses obviously all stemming from an untreated GI autoimmune response. The medical system is completely useless, and as someone joked to me the other day you can go in with your head hanging off and they will ask you 'are you depressed' and tell you you have IBS with ANY stomach complaint
Hi Again, looking back I tended to go to the doctors with random issues, for instance I thought one of my legs was longer than the other one at one point, I think I was suffering from some sort of gluten ataxia, which made me feel off balance, it all started making sense over many years, when I was diagnosed with DH my family doctor said he had never seen it before, yet the dermatologist said he thought it was fairly common. Yes I did have to have the endoscopy which confirmed the damage. I totally agree about the blood tests not being followed up on and the working out of what could be wrong if more time and thought was applied to each patient, the NHS is set up to treat when things eventually go wrong, we should be looking at prevention, the money that will be saved would be huge but it would take a lot of input to set it all up. I think in the future peoples DNA will play a big part in diagnosis. I hope you manage to get your diagnosis, my daughter also had issues, due to my diagnosis she had an endoscope and coeliac tests, all of which came back negative and the old IBS diagnosis was given. There is a channel 4 TV show which is showing at the moment called Know your S*** it might be worth watching.
Meant to have a call today from doctor and I'm now told my results are waiting to be seen! Had the test on the 9th, won't be until wednesday now! I'm guessing I have it as usually they release them to you if they are normal. What level of damage did they say it was? Was it the last stage of complete atrophy? Thats what I'm expecting. Thanks so much for all your helpful responses, this is definately the last question!
P.S I also have vitamin deficiencys and got really ill with neuro symptoms (dizziness, bumping into things, terrible memory loss very scary almost like dementia like symptoms in the end). A chance meeting with someone with pernicious anaemia helped me to start injecting b12, I get very ill without it as tablets seem to have no effect. I think I cannot absorb from food due to the damage of my stomach. Just something to keep in mind for you too as doctors certainly dont seem concerned although b12 deficiency is no joke when it goes untreated for so long (serum b12 means nothing, it must be the active b12). If you can get a diagnosis they will start you on injections but as they said they didnt have the facility to test for active b12 I had to go and help myself. An active b12 test may be handy to get even if you cant get it from GP, get it online. I got mine from monitor my health which was a waste of time as I had already started supplementing! So if you do have it, dont start on b12 befroehand
Hi sorry for the delay in replying, I haven't been on the PC much. I will always get back to you and am happy to help so please don't worry about contacting me. Are you a member of the gluten free group on Health unlocked, Gluten free guerrillas?, there are people on that group that are very knowledgeable and like this one always happy to help.
Sorry I thought after I sent my last message I should have mentioned to you about Vit B12 with your fatigue, however you seem to have learnt about it and the fact the NHS test they give you isn't reliable. I was on injections before covid and am now given tablets, I did ask a couple of months to be put back on the injections but a blood test put me above the recommendation for the injections so I didn't have the energy to question it. I didn't know about the monitor my health active B12 test so thank you for that.
In regards to my endoscopy and damage to the villi, all that the immunologist advised was that the damage was moderate to severe.
Hope you get the result you are wanting on Wednesday, let us know how you get on x
Thankyou xxx
Seems par for the course that you have to fight for b12 injections when you have the diagnosis. The pernicious anaemia group on here has been very helpful. If I wouldn't have learnt about getting the b12 myself and injecting, I really dont know what state I would have been in. It was a very frightening time but thankfully I'm better after self injecting. I was terrified but I was so ill that I was forced into having to take action. I had slurred speech, forgetting words and even my childrens date of birth and my own age. It was very very bad, I looked drunk in the end. If you need b12 never let that slip as it is so serious. I think I have nerve damage in my legs and feet as they feel more numb than they used to and my feet would always get hot in the night but now they are always freezing. Don't think I'll ever get back to how I was but so thankful that I found a way to help myself as GP didn't take any notice of me. Its very worrying what is happening with the NHS, they have never helped me so I dont expect that to change now.
Thanks for all the help (moderate to severe - no wonder)
Hi sorry for the late response, glad to hear that the B12 is helping you and you notice such a difference. I haven't noticed much difference in my health when I am not on the injections if I am being honest.
I had taped the channel 4 programme I mentioned in my earlier post and have just watched the Feb 14th episode and there is someone on this episode who had psoriasis and also bloating, they discover he is coeliac and it shows him having an endoscopy. Apparently psoriasis is connect to CD.
You dont have long to wait until you find out your results, please let us know how you get on
Hi they tell me it's normal I haven't got coeliac, they wanted to speak to me about my high b12 test result. That was the abnormal result not the coeliac. Half happy half frustrated as I'm still in the dark! Thanks for all your help!
Oh thanks for letting me know, if it makes you feel any better, I was very pleased when they diagnosed me thinking I was going to feel so much better, and don't get me wrong there are plenty of positives, i.e. don't get asthma like I did and the DH rash went, but it took around 5 years for the rash to go completely but I am still not bounding with health and vitality either now, I have good and bad days. Good luck on your journey for good health. I hope you do get some answers x
Hi just a thought in case you didn't know, some people dont make the antibodies to indicate CD in the normal test we get on the NHS so even though they have it, the normal test will never be positive, there is more info on this site coeliac.org.uk/information-...
Thank you, I wasn't actually hardly eating gluten as well. I asked for a gastro referral that I was promised back in January so hopefully if I get an endoscopy I will get an answer. This is why I always just give up because it's like a golden ticket getting a gastro referral
My daughter got an endoscope even though her bloods were negative. Also I had my DNA done on 23&me and that shows I have one of the genes to be coeliac. My daughter whose endoscope was negative doesn't have the gene. Don't know whether this might be helpful to you x
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