I have been feeling really unwell the past week or more palpatations, throbbing headache, feeling quite strange/almost confused. In had blood done on 7th which it took me ages to get results of. By the time I managed to get them I had to have more done as I felt so ill. They say i am hyper. I am in agreement but unsure why it has happened and would like an opinion on my bloods as they do confuse me.
Does anyone think it could be down to going gluten free for 5/6 months now?
Could.someone help interpret my bloods.
The one from 7th Jan :
Serum t4: 15.1 pmol/L (7.5-21.1)
*Serum TSH: 0.23 miu/L (0.34-5.6)
The tests from 27th Jan:
Serum free T4: 18.4 pmol/L (7.5-21.1)
Serum ferritin: 59 ng/ml (10-180)
*Serum TSH: 0.03 miu/L (0.34-5.6)
Serum vitamin B12: 357 ng/L (110-914)
Serum folate level:5.7 ng/'ll (3.1-19.9)
Haemoglobin concentration:132g/L (115-160)
Total white blood cell count: 6.53 10^/L (4-11)
Platelet count: 247 10^9/L (150-400)
Haemocrit: 0.405 (0.37-0.48)
Red blood cell count: 4.51 10^12/L (3.9-5.6)
Mean cell vol: 90fl (80-99)
Mean cell haemoglobin concentration: 32.6g/dL (31-37)
Red blood cell dist width: 12.3% (10-16)
Neutrophil count: 3.89 10^9/L (1.8-7.5)
Lymphocyte count: 1.99 10^9/L (1-4)
Monocytes count: 0.48 10^9/L (0.2-1)
Eosinophil count: 0.13 10^9/L (0.04-0.4)
Basophil count: 0.04 10^9/L (0.02-0.11)
So is it just hyper? I didnt think id feel so tired.
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Pooka77
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There’s no indication there that you’re overmedicated. Your TSH is low, sure, but we find that happens a lot once someone begins taking thyroid hormone replacement. Your FT4 levels aren’t over-range. Unfortunately they haven’t tested your FT3 levels, which would provide the key information about whether you’re converting T4 to the active thyroid hormone T3. It’s actually more than possible that you’re under rather than overmedicated.
Did you take your levothyroxine on the morning of the test? How much are you taking?
Your B12 and folate levels look a little on the low side.
Finally, has anyone ever tested your Vit D levels?
Yes that is exactly what happened to me. I went gluten-free 2 years ago and within a couple months I started feeling bad symptoms were sort of on and off I was feeling fluish almost. My TSH went from 2.6 to 1.3, my single module disappeared and my antibodies drops to normal range in just two months! But symptoms continue to worsen. My endo continue to tell me it was not my thyroid even though by now my heart rate increased blood pressure was way too high I was having multiple bowel movements. Went to a another functional type doctor who made the mistake of adding a massive dose of T3 thinking that's what I needed when I really needed less medicine! At that point I got extremely ill. Finally another doctor explained I needed less medicine and finally after 2 years and a lot of suffering (and finally finding the right doctor to help me) I'm doing better on a tiny dose of tirosint. It has been horrible getting through this! Since my labs did not show the problem I learned to depend on my pulse pressure. You take your blood pressure subtract the bottom number from the top number and multiply that number by your heart rate. So far example if your blood pressure is 120 over 80 attract a t from 120 and that's 40. Multiply 40 by your pulse. So if your pulse is 60 then you're pulse pressure number is 2400. If it's over 3,200 it's likely you need to cut back on medicine. A very old internist explain this method they use this before blood test for Handy like during World War II. It has been completely true for me back when I was over-medicated my pulse pressure was up over 5,000 and now that I have adjusted somewhat it is back down in the 2500 range. Also Izabella Wentz recently posted about a study on diet affecting symptoms and it is very interesting. People who went gluten free symptoms got better they needed to cut back on medicine but their blood's didn't necessarily correlate. I have a link to that study and will send it if you're interested. Back when I went gluten-free my doctor should have told me to watch for symptoms and perhaps would need to reduce meds but she didn't. So I suffered severely and it took a long time and many doctors visits to figure it all out. I am not 100% but I've made good progress the last year after being horribly over-medicated for so long. So I had been through all of it and happy to give you more details -- private message me if you'd like that study. It's a shame we have to suffer like we do because many doctors don't know and don't care!
Could well be hyperthyroidism with excess fT3 levels, the rapid change in TSH suggests this but why on earth did they not measure fT3 if they suspect hyperthyroidism. They should measure your fT3 to find out what's going on and give you a referral to a specialist. What is your heart rate? Have they measured it and have they given you something for it if it is too rapid?
The NICE Guidelines are dreadful. However, they state: -
1.2.9 Consider measuring both TSH and FT4 for:
adults when secondary thyroid dysfunction (pituitary disease) is suspected
children and young people.
If the TSH is below the reference range, measure FT3 in the same sample.
Have they checked your heart rate or pulse? This is essential. You can check your pulse, I'd do it and see what it is.
I would tell the doctor they are being negligent in not requesting fT3 as it is against the NICE guideline. (Usually the lab would do this automatically if TSH was low - often literally automatic, the computer runs the test).
If you haven't done so I'd strongly recommend taking someone with you to the doctors, preferably male (not me being sexist, just reflecting their attitude).
With regard to guidelines, the same principle applies. Case law around guidelines is complex. In essence, the starting point is that guidelines should be followed unless there is a good reason not to. However, NICE themselves has said that guidelines must not replace a doctors professionalism and judgement and that guidelines cannot by their very nature cover every eventuality.
Further, doctors are under a duty to use the patients knowledge and understanding of their condition. This could clearly be outside the information presented in guidelines.
The courts have also given people guidance on how to assess the strength of guidelines in Ali v London Borough of Newham [2012] EWHC 2970 (Admin) (30 October 2012). The court said:
"As to the principal contest between the parties, namely, the status and effect of non-statutory guidance, I recognise some force in [counsel’s contrary] submission that the court should be circumspect and careful so as to avoid converting what is a non-binding guidance into, in effect, mandatory rules. To do so would tend to subvert the intention of the guidance and would risk undermining the autonomy of the primary decision maker upon whom Parliament has conferred ultimate responsibility for discharging the function in question. However, this does seem to me to be yet another area which bears out Lord Steyn’s famous dictum that “in law, context is everything”.
"In my view, the weight that should be given to particular guidance depends upon the specific context in which the guidance has been produced. In particular (without intending to create an exhaustive list) I believe that it is necessary to give due regard to
>the authorship of the guidance,
>the quality and intensity of the work done in the production of the guidance,
>the extent to which the (possibly competing) interests of those who are likely to be affected by the guidance have been recognised and weighed,
>the importance of any more general public policy that the guidance has sought to promote, and
>the express terms of the guidance itself.
In my view, it would be unwise for the court to descend into the intrinsic merits of the guidance, unless it was seriously contended that it was unlawful or very obviously defective."
I think that there is a sufficient weight of evidence to show that the BTA guidance and the other guidance that flows from it NHS, PresQUIPP etc. is obviously defective. it is just not in one place and easy to see.
I wouldn't want to drift away from the original question. I agree with your comments. However, my experience of Dr Skinner's hearings is that the GMC does not act in an honourable manner. The GMC repeatedly tried to claim that guidelines overruled a clinician's judgement. Even though no such guidelines existed! We can have guidelines good or bad but some groups act in bad faith and legal redress is a difficult and expensive route.
The Medical Practitioners Tribunal Service has done that in the recent case against Dr Mouton!! Plus they have ignored the GMC's own legal advice that "our" way of treating patients is supported by reasonable body of medical opinion, as provided by their own Counsel Tom Kark QC when the GMC had Dr Myhill in front of them.
This is why I post the information about guidelines, to counter act the argument that doctors HAVE to follow guidelines.
In fact that there is case law to show that strict adherence to guidelines can be negligent.
Further, TPA UK have a letter from the Department of Health stating that a doctor can use ANY guidelines that are appropriate. Of course , s/he has to show that they are appropriate as does any patient who make the doctor aware of contrary guidelines.
In my view jimh111 is giving good advice. I'm going to add my part as well.
As you know from this forum, measuring T3 IS clinically indicated. This is because T3 is the active hormone that all the cells use. I am not sure that a doctor can say that you are hyper based on the blood tests that you have had.
Therefore it is not logical to say T3 is not clinically indicated. Doctors must be logical when their decision making and this is backed up by medical negligence law See Bolitho v. City and Hackney Health Authority [1996] 4 All ER 771.
In my view your doctors are being negligent by not being logical in their approach.
My advice is similar to jimh111's.
work out what you want to say, write it down if necessary, bring someone with you to help you if you need it. Doctors seem to be more guarded when someone else is there and as jimh11 said, especially males.
Be resilient, but not argumentative. They work for you, and the GMC and the law say that you and your doctor must work together. For you it s your life and day today well being. For him/her its just a blood test, but you would be forgiven for thinking you were asking for the crown jewels.
I have got the end o to send me out a blood form to take into to gp which has t3 on it also.
I had my husband with me yesterday and they still refused.
The next time I will go armed with more solid arguments as to why they should test it.
Before I have the tests though I would like to know whether to restart my levo. I've been too scared to take it. And tbh. Feel much better for holding it. I want good results to take to endo in 3 wks.
If you feel better without the levo I would hold off taking it. This will give a more reliable blood test result than having been on levo for three weeks. It will also show your blood levels when feeling better than before.
Hi am I missing something as looking at your results your ft 4 has increased a little and remains in range, your TSH is indeed more suppressed but difficult to comment with out the ft3. My TSH is always supressed as Im on a combination therapy & I have to say the labs do not always do my ft3 unless my GP writes on the electronic form suspected hyPERthyroidism. It certainly isnt automatic that my labs will test ft3 if your TSH is supressed.
Your B12 is however too low! Many people with that level get all sorts of symptoms anf feel terrible....all the ones you described. I suggest you look at B12d.org -they have an assessment sheet that will tell you what to do once youve completed it.
I would disagree on balance but would not express certainty, we need to see fT3 results. If you want to go back on levothyroxine I would strongly urge you to wait until after your blood test. If you resume taking levothyroxine now the results will not be informative. How much fT4 is coming from the thyroid and how much from the levo?
The rapid change in TSH from 0.23 to 0.03 suggests a rapid change in fT3 as can happen in autoimmune thyroiditis. There is an inverse log normal relationship between TSH and thyroid hormones. This means a drop in TSH from 0.23 to 0.03 is similar in scale as a drop from 23 to 3, in mathematical it's the change in ln(TSH) that matters not the arithmetic difference (0.23 - 0.03 = 0.2). What I'm trying to say is that TSH has changed a lot over a short period of time. See where the numbers are whilst you are not taking any thyroid hormone, then you can try levo again if necessary.
I am as usual even more confused than ever after reading all the advice. I am so confused as to whether to recommend a levo. Tbh it scares me the thought of feeling that way again. I am awaiting t3 test but might be any time between tomorrow and Monday b4 I can have it done. And if I wait until biotin is out of my system it'll have to be next Tuesday.
I feel better than I did that's for sure. Don't feel like I'm going to have a stroke/heart attack still getting palpatations on exertion but not resting like I was.
I hate all this uncertainty.
I do see Dr tomorrow , I'm hoping my form from consultant will have arrived by then.
I really do appreciate all the help, but sometimes it's overwhelming and difficult to navigate.
It IS difficult to take it all in. You are not alone 😉 I’m sure many of us on here feel the same. I keep a notebook and write down the advice. Helps me filter through it once off the forum and formulate questions for Dr etc., With thyroid problems as well, we get memory problems and brain fog. Don’t be too hard on yourself 😀
I would just stay as you are and wait for the blood test results. If the form from the consultant hasn't arrived get the doctor to either request it or agree to give you the blood test when he receives the form. There's too many whatifs until we have the blood test result, this makes everything more complicated. It will be simpler when you have the next set of results.
Jim correct me if I'm wrong . But any T3/NDT can lower the TSH even if FT3/FT4 is in range . FT3 FT4 are the *Essential* markers for our thyroid results . TSH is a pituitary marker .
TSH is a good marker in most people but sometimes is a poor marker because the pituitary is not performing properly. In these cases TSH should not be used to monitor thyroid health - try telling endocrinologists. TSH responds to both fT3 and fT4 , this study ncbi.nlm.nih.gov/pmc/articl... looks at the relative effects of L-T3 and L-T4 tablets. There are other studies that look at the relative effects of serum T3 and T4 on TSH.
It's just possible that TSH responds more to the peak T3 levels (rather than average) when patients are on L-T3 or NDT, in this case it would make sense to split the dose. This is just speculation, the study I reference shows the relative effects on TSH when the tablets were split into three daily doses.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Ferritin could be higher ...look at increasing iron rich foods
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
I recently started some supplements but do get confused about what is good to take and recently I have got a.bit slack at taking them. Not too worried about vit d as had done a while ago and was bit on low side so been taking spray bit d supp.
I.really do feel looking at symptoms.of.hyper that it fits how I.am feeling.
Does anyone.know.how Long it takes to wear off?
I.was. due to see endo in 3 weeks. He didnt want to change anything last time as they had just changed my dose and ill be in same boat again.
I have a medichecks kit to test t4, tsh and t3. Should I do it? Do you think.it will.shed some.light on things?
In Sept was changed from 150 to 125. After 6-week bloods was then increased to 150. Another 6 weeks and reduced to 125/150 alternate days (This was Nov I think) I then had checked on 7th jan which was about 8 or 9 weeks after but didn't get results until 27th (presume they pay less if lab takes longer).
I.alsi had rechecked on 27tj as I was feeling so bad and they also did full blood count.
How confusing. I was ok on 150. That stupid doctor who I never even met back In August (She spoke on phone) changed my dose and set me.on this collision course.
It's unfortunalately quite common for someone to be well for a long time, then one day a doctor lowers their dose and they have months or years of trouble
Slow dragon can you tell me. If it is a hyper as possibly indicated by low tsh, What would you expect to find with the t4. Inyou opinion would you expect the t4 to be higher than it is here? And when I get the t3 back what am I looking for?
So if it is a hashimoto flare what do I do to treat myself in you opinion?
The gp reduced my levo from 150/125 alternate days to 125 daily. But honestly I haven't taken any levo since last Thursday morning and do feel better for it.
What should I do now?
I was going to stop taking my b12 supp as advised for one weekend so I can do the medichecks test next Monday. But what do I do with levo. Should I start taking it now I feel a bit better?
I’ve just spotted that you’ve recently (a) had your dose reduced on the basis of TSH only and (b) you’ve started having gluten again recently after months of not having it.
This could actually be as simple as your body demonstrating it really really doesn’t like gluten. I get palpitations when I’ve been glutened. It’s one of the first things that happens to me. Foggy thinking follows...
Dose was.chmged back in oct/ Nov. Stated eating gluten about 2 weeks ago and now stopped again in case affecting it. I don't think.gluten suits me but that's not only thing here. Didnt.get any symptoms after eating gluten.
I.did.wonder if what had happened was that the gluten free diet had meant I didn't need as much levo as I had prior.to starting gluten free diet. I hadn't noticed any difference in how it felt (it wasnt the.miracle promised!) which is why I started eating it again.
I do take supplements but not for past week and I didn't take levo b4 the test.
I had my vit d done back in Sept and was ok but on low side. I have been using a spray supplement vit.d
When I look at symptoms of hyper. It fits perfectly. Palpatations, tiredness, feeling dizzy, weak, my thyroid is swollen, I can feel.when i swallow
You have low folate and B12 and your ferritin is also poor. Nothing to show overmedication. But there is no Free T3 test, which is the most important. More likely you have a winter bug as your immune system probably isn't great. Were both tests done fasting, early in the morning and 24 hours after last dose of levo?
I’m no doctor, and don’t know nearly as much as most of the very knowledgeable folks on here. But, I have had Hashis for almost 30 years. It would indeed be good to have your FT3 tested. Having said that, I would trust your gut on this to some degree. Your symptoms certainly sound like hyper to me, and feeling better since holding your meds reinforces that idea a bit in my mind. I had a hyper swing this past summer and the worst headache I’ve ever had in my life for days. I also felt feverish and my BP was high. It was horrible! So many things can affect levels fluctuating sex hormones, weight gain or loss, diet etc....hope you get it squared away soon. I’ve started ordering and paying for my own labs.
You've had lots of good replies, just a few bits of info:
Yes, being gluten free can reduce your need for thyroid hormone. Some people need a small decrease once they are settled on gluten free. Obviously having some gluten will then make them feel very ill.
The only treatment for Hashi's flares is for you personally to keep an eye on yourself and start noticing the patterns. It may just be something to suffer through, or you might be able to manage it by reducing your tablets for a short time.
It's very common to feel better when stopping Levothyroxine. It doesn't necessarily mean you were overmedicated before (personally I felt it more when I was v undermedicated). It's just one of those weird things.
Supplementing Vitamin D is no guarantee that levels are good. You need a retest 6 months to a year later. If a doctor told you you're a little bit low it means you're extremely low, so probably need a high loading dose.
Yes that is exactly what happened to me. I went gluten-free 2 years ago and within a couple months I started feeling bad symptoms were sort of on and off I was feeling fluish almost. My TSH went from 2.6 to 1.3, my single module disappeared and my antibodies drops to normal range in just two months! But symptoms continue to worsen. My endo continue to tell me it was not my thyroid even though by now my heart rate increased blood pressure was way too high I was having multiple bowel movements. Went to a another functional type doctor who made the mistake of adding a massive dose of T3 thinking that's what I needed when I really needed less medicine! At that point I got extremely ill. Finally another doctor explained I needed less medicine and finally after 2 years and a lot of suffering (and finally finding the right doctor to help me) I'm doing better on a tiny dose of tirosint. It has been horrible getting through this! Since my labs did not show the problem I learned to depend on my pulse pressure. You take your blood pressure subtract the bottom number from the top number and multiply that number by your heart rate. So far example if your blood pressure is 120 over 80 attract a t from 120 and that's 40. Multiply 40 by your pulse. So if your pulse is 60 then you're pulse pressure number is 2400. If it's over 3,200 it's likely you need to cut back on medicine. A very old internist explain this method they use this before blood test for Handy like during World War II. It has been completely true for me back when I was over-medicated my pulse pressure was up over 5,000 and now that I have adjusted somewhat it is back down in the 2500 range. Also Izabella Wentz recently posted about a study on diet affecting symptoms and it is very interesting. People who went gluten free symptoms got better they needed to cut back on medicine but their blood's didn't necessarily correlate. I have a link to that study and will send it if you're interested. Back when I went gluten-free my doctor should have told me to watch for symptoms and perhaps would need to reduce meds but she didn't. So I suffered severely and it took a long time and many doctors visits to figure it all out. I am not 100% but I've made good progress the last year after being horribly over-medicated for so long. So I had been through all of it and happy to give you more details -- private message me if you'd like that study. It's a shame we have to suffer like we do because many doctors don't know and don't care!
Thats really interesting sroth2407. Im going to make a note of this. Ive been very stable for a few years now but its a good one to keep up my sleeve. 😊
I do sympathise Pooka. To be honest I think your doctor messing with your thyroid dose reducing it, increasing, reducing again in a few short months has upset your metabolism. This happens when they treat by TSH. Its a very inefficient & ineffective way ot treating someone....lol.
Frankly you are far better to ensure you have a full thyroid panel of FT4. FT3 & TSH each time as you get a much better picture. The other thing I used to do is take my pulse first thing in the morning & my temperature before getting out of bed. This added with a little note of your symptoms & signs, vits minerals taken gives a much clearer picture. Keeping a log like this will give you trends.
Please do treat your low B12. B12 is important with thyroid function too & also your symptoms eg palpitations, anxiety, shaking trembling, feeling tired, could be b12.
We assume everything is due to our thyroid once on treatment but it isnt always so....
I know. Its so difficult. I work nights and have 2 young kids. With the state of mind its a miracle off I manage to brush my teeth of a morning!
It's too much for me to take in. I think it's why when I'm in the doctors office I just go along with what they say. I feel defeated. I find it hard to follow and a lot of it is conflicting advice . It just makes me more confused. I know everyone is trying to help. If only I could pick out the important bite
I'm thinking of making a complaint to my practice manager about the poor management of my hypothyroidism and the lack of continuity of care.
I think if only I could see the same gp it would help.
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Back with test results, please advise!
Advice on supplements after blood tests.
Results help please
Are these results ok?
