Hi I've just had some blood tests done on the 7th March and my TSH level has come back at 0.21 with a range (0.55 -4.78) I take NP Thyroid (NDT) daily 1 grain.
I've recently had a problem with my heart and I'm beginning to wonder if it's to do with my thyroid, I'm now not sure if I'm taking too much and also if this is the correct medication as I'm starting to wonder if it's graves disease? My free T4 is in the range at 13.1 (11.50-22.70) any advice would be much appreciated as I feel like I'm going round in circles thank you! x
I also had the following results if this means anything else which might help;
Folate - >24.00 (3.00 -19.00)
Ferritin - 41 (10.00 - 291.00)
Vitamin B12 - >2000 (211 - 911)
I'm constantly tired and fatigued I'm beginning to wonder if I have a malabsorption problem? Does anyone know if a high B12 level can be due to the B12 pooling and not transferring into the cells as I'm not injecting and it has risen by over 1000 in 5 months thank you X
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Bess48
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Hi. Do you have pernicious anemia and are you supplementing b12?
I've been injecting for 2 years. I have PA and hashimotos.
I started getting really odd new symptoms last year that didn't seem inline with PA or any hashi symptoms I've had before. I was thinking it was a food allergy or perimenopaus.
Long story short, doc changed my thyroid med from levo to ND but I hadn't been tested in over a year. My weird symptoms became out of control and very scary within weeks. Got my tsh after 6 weeks of med change and I was hyper with a tsh of I think .25. I've never been below 1 in 25 years. So he told me to take a few days off the ND (generic armour) and start at a lower dose. I was too scared so I took 2 weeks off then asked doc to test me and put me back on levo. Tsh went to 28 after 2 or so weeks without meds. Started on a lower dose of levo. Got tested again and tsh was .83, still having symptoms.
Original levo dose was .150. Then moved to ND, can't remember dose, then .137 levo, now .125 and need to go for testing in a few weeks.
In 25 yrs I have never had a med decrease. I was also worried I have developed graves but I can't shake the feeling this is related to PA treatment.
The hyper symptoms are SCARY. I really feel for you. I had the most intense hives, racing heart, palpitations, worst anxiety ever, always crying, panic attacks, hair falling out, racing thoughts, starving all the time but also have stomach issues so couldn't eat much, and many more symptoms. I had been having these symptoms at a lower level for over a year so I suspect I was at least borderline hyper all that time.
I'm thinking I may still need a med decrease but idk cuz it's so hard to tell what's what with all these autoimmune issues and possibly perimenopause.
Thank you for replying to me I'm sorry to here that you've had an awful time too, I'm currently scared to take the NDT myself due to my latest blood tests and my GP saying it's too high on one grain I'm debating whether to go onto half a grain and then see if they will retest and I've had all the awful symptoms you described but I was always told I have hypothyroidism and not hyperthyroidism I'm starting to wonder if this has changed?
The doctor has actually told me to come off the thyroid medication for six weeks and then retest the TSH but I'm rather worried about this incase I end up very ill.
Yes, go to thyroid uk group for this. But basically TSH irrelevant once treated for thyroid problems. You need then to consider free T3 (the more active hormone) and free T4 (the storage hormone) for a better understanding. In range does not mean optimally treated.
Your free T4 is just scraping along the bottom of the range and you don' t know the free T3. Looks like undermedicated and hypothyroid rather than Graves but best to get full testing including antibodies and free T3.
Thyroid medicine has a very narrow window between what works and what is toxic. I had a thyroidectomy 2 an 1/ 2 years ago and have struggled to get the right dose for me. I'm on Armour. My endocrinologist told me that with Armour, free T4 can remain at the very bottom of the range, and that this is normal on Armour. My TSH is now at 2.8. If I increase my dose just a little bit more from where I am now, I get scary heart symptoms. I weigh 106 now. I take 1 30mg pill morning and night along with an additional 1/4 plus 1/16 of a 15mg pill at the same time. I cut the 15mg pills down to powder and divide them into fractions 1/ 2, 1/4, or even 1/8, then even half the eigth, to make increases very very slowly. When too hyper, my symptoms go from shortness of breath when climbing the steps, to hunger and needing to eat more, possibly more nervousness, possibly palpitations, and worst of all, chest pain. It does sound to me like your doctor is right that you need to cut back. You do not sound to me to be hypo, as some have told you here.
The most dangerous thing that I've found about this is that, when I previously took levothyroxine as opposed to Armour, my heart could not tolerate it, but my numbers were all hypo still so my primary doctor was telling me my heart symptoms were not related and that I needed to take more. This would have been very dangerous. Fortunately I have a good endocrinologist now. The natural desiccated thyroid, Armour has been much better for me. I will still get heart symptoms if I take too much though. This really needs close monitoring by a good endocrinologist who treats primarily thyroid (as opposed to diabetes) when this happens. It is truly a horrible thing.
High B12 results without taking B12 supplements/injections can sometimes be the sign of a serious health condition.
I'd expect GP to at least do liver and kidney tests and a full blood count (FBC) and to consider referring to a specialist in a patient with high serum B12 who isn't taking B12 supplements/injections.
I left some info that might be of interest in this thread
Hi, yes definitely B12 if not uktilized at cellular level does build up in bloods. And for me that happened when I was hypothyroid. As soon as I improved thyroid, metabolism kicked in & B12 Serena level regularised. I was told not to take B12 while my levels were high. Unfortunately, you didn’t mention your FT3. which is the all important result. If that’s low, it will need improving. Have you got that result ?
Thank you for the information on B12 as I was wondering if this was starting to build up and not absorb into my cells, no unfortunately they didn't do the FT3 on the NHS I've actually been trying to arrange a private blood test for this today but haven't been successful so far I'm waiting on a reply.
Hi Bess, it’s usual to get the thyroid panel (TSH, FT4 & FT3 ) bloods done together so they can be read in conjunction, But I had trouble getting the FT3 done through NHS, so opted to get done privately (home test). FT3 is worth testing, so you can discount cellular uptake problem. My serum B12 was high for good few years until I started Thyroid meds. If I were you, I’d start with getting your FT3 checked, have you ever had that done? Assume you have as your on thyroid meds, as mentioned above your Ferritin needs improving too. You might find the Monitor my Health home test would be suitable, as it covers a number of results in one test. As you need to consider your Ferritin needing to improve too & M my H test includes that. Post results here & we can all get a better picture. It might be you’ll need to increase or tweak the type of thyroid meds you take, but my advice get your results first. Are you under care of endocrinologist ? If so, they should be looking into. By the way, above just my thoughts - I’m not a doctor. But, for now take it easy & wait for your results. 😊
Your ferritin appears quite low. As a precaution you should request a full iron panel to include: TIBC, % iron saturation, and serum iron. Iron anemia = fatigue. Your RBC, etc. will appear normal because you have macrocytic anemia (PA) whereas iron anemia is microcytic. This renders labs normal since macro (B12) + micro (Iron) = tug of war on MCV, MCHC, etc. landing results in the middle.
Specific to your wonky TSH have you had recent labs to check for hashimoto thyroiditis (antibodies/TPO)? Hashimoto will cause swings from hypo to hyper. If you have PA other autoimmune conditions more commonly co-occur.
Lastly, make sure none of your supplements contain biotin. Biotin is safe although you have to stop taking it for at least 3 days prior to thyroid labs. Biotin doesn't have an effect on the thyroid gland itself. It is well-documented to have an interaction with thyroid labs.
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