Hello. I’ve had an under active thyroid since my 2nd child was born, 13 years ago. In that time I’ve been on 125mg of Levothyroxine with no apparent changes required. However in recent years, I’ve been increasingly more anxious, unable to get restorative sleep, sleeping a lot! Weight gain, unable to lose weight, brain fog....you get the picture. I had a private thyroid test on 18th May, which suggested everything was in range but my antibodies were raised. TSH 0.91, free t3 4.25, free t4 18.4. Thyroglobulin antibodies 426, thyroid peroxidase 221. My GP wasn’t concerned. So I decided to have a well woman screen, taken 15th june. This included TSH which has decreased to 0.09(?overactive now), free t3 increased to 5.09, free thyroxine increased to 21.6. I’m slightly concerned by the decrease in TSH in such a short period time, is this something I should be pushing my GP to review??
Hypo you hyper?: Hello. I’ve had an under active... - Thyroid UK
Hypo you hyper?
Zhr1
You haven't given the reference ranges for your results, these are very important as ranges vary from lab to lab. However, if you used one of the private labs recommended here - Blue Horizon, Medichecks or Thriva - they are all the same.
Assuming you used one of those labs (please give ranges if they are different) then your results on 18th May were:
TSH: 0.91 (0.27-4.2)
FT4: 18.4 (12-22)
FT3: 4.25 (3.1-6.8)
Thyroglobulin antibodies 426 (<115)
thyroid peroxidase 221 (<34)
Your raised antibodies confirm autoimmune thyroid disease, aka Hashimoto's **.
On 15th June your results were:
TSH: 0.09 (0.27-4.2)(?overactive now),
free t3: 5.09 (3.1-6.8)
free thyroxine: 21.6 (12-22)
As you are hypOthyroid it's a physical impossibility for your thyroid to suddenly regenerate and you become hypERthyroid, although you can be overmedicated. It's the FT3 result which tells us if we are overmedicated - if it's over range we are overmedicated.
To compare results accurately it's important to always do the tests under the same conditions, i.e. no later than 9am, nothing to eat or drink before the test except water, last dose of Levo 24 hours before test. Can you confirm that both tests were done like this?
With your second test, your FT4 has increased so it's no surprise that your TSH has decreased. Your FT4 has gone from 64% through range in May to 96% through range in June. It's important to know when you took your last dose of Levo for both tests as this may have some bearing on the result.
**As for the Hashi's, this is where the immune system attacks and gradually destroys the thyroid. Symptoms and test results fluctuate when Hashi's is present.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Definitely not! Your GP will just want to reduce your dose, which probably wouldn't be a good idea - although difficult to tell because you haven't put the ranges for those results. Please, always put the ranges, because they vary from lab to lab, and we need the ranges that went with your results.
OK, so firstly, if you're hypo, you cannot go hyper. It's a physical impossibility. You could be over-medicated, but the TSH alone cannot tell you that. You're only over-medicated if your FT3 is well over-range.
But, if your antibodies are high, it means you have Hashi's, and with Hashi's, levels can jump around. Your GP wasn't concerned about your high antibodies, because he doesn't understand what it means. Doctors know little or nothing about Hashi's.
Another thing to consider is: were those two tests done at the same time of day? TSH is highest around midnight, then slowly drops throughout the day. So, there will be quite a difference in a TSH tested at, say 8 am, and one tested at 2 pm.
So, if I were you, I'd forget the TSH, it's not that important. It's the FT3 the most important number, and the one that should be used for dosing purposes. 
Thank you both for your replies. Both tests were by Medichecks and both taken at approx the same time in the morning.
18th May :
TSH 0.902 (0.27-4.2
Free t3 4.25 (3.1 - 6.8)
Free thyroxine 18.4 (12 - 22)
15th June:
TSH 0.091 (0.27 - 4.2)
Free t3 5.09 (3.1 - 6.8)
Free thyroxine 21.6 (12-22)
Also...
RDW 15.8 (11.5-14.4)
TIBC 76.74 (45-72)
Transferring saturation 10.74 (20-50)
Ferritin 11.2 (13 -150)
B12 43 (>37.5)
The doctor that has written the report had suggested a MMA test to check for possible absorption issues I’m assuming.
I have read the invisible hypothyroid book, who did suggest that she swing between under and over active before proper diagnosis. Also some site indicate it is possible, but very rare. I find a lot information confusing and conflicting.
Thanks
Clearly your Ferritin absolutely DIRE
SeasideSusie or humanbean msy pop along to comment on Ferritin
See/phone GP for full iron panel test for anaemia
You are highly likely to need iron supplements....possibly an iron infusion
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Links about iron and ferritin
irondisorders.org/Websites/...
B12 is far too low
Active B12 below 70 needs further testing
nutris.viapath.co.uk/pages/...
You need folate and vitamin D testing too
Thank you, folate and vit D were tested, I had a comprehensive test, I’ve only mentioned what was out of range.
Can you add the actual results and ranges on these too
I have read the invisible hypothyroid book, who did suggest that she swing between under and over active before proper diagnosis. Also some site indicate it is possible, but very rare.
I don't know who wrote that book, but it sounds like she doesn't know very much about how it all works. Presumably she had Hashi's? With Hashi's, you can have swings that go from hypo, to false 'hyper', then back through euthyroid to hypo again. That is because the immune system is attacking the thyroid, to kill it off, and as the cells die, they deposit their stores of hormone into the blood, causing the levels of FT4 and FT3 to suddenly rise, and therefore the TSH drops. But, that is not the same as the thyroid over-producing hormone, which is what true hyperthyroidism is.
If you have Hashi's, as I said, the thyroid is slowly being destroyed by the immune system. The cells are dying off. It is impossible for the thyroid to suddenly regenerate to such an extent that it can start over-producing hormone. It is physically impossible.
In any case, hyperthyroidism cannot be diagnosed simply by a TSH test. To be hyper, you need your FT4 and FT3 to be extremely high. Yours were still in-range, so that could hardly be hyperthyroidism.
Another possibility is - and this is pretty rare - that someone has Hashi's and Grave's at the same time. In which case, the Grave's antibodies could be over-stimulating the thyroid so that it goes from hypo to hyper, but I've never actually seen that happen on here.
The MMA test is for your low B12, to see if you have Pernicious Anemia - another autoimmune disease. As autoimmune disease tend to hunt in packs, it's not uncommon to have both Hashi's and PA.
Just a little tip, on this forum you need to reply to someone by clicking on the blue 'reply' button under their comment. Otherwise, they will not be notified that you have replied. You cannot reply to more than one person at a time. I only saw this by accident.
Thank you for the tip 😁.
Folate serum 6.64 (>3.89)
Vit D 69.6 (<30 deficient, 30-50 insufficient, refuse dose if >175)
Thank you for your help. I did try to post screen shots of the whole report but it wouldn’t let me, though I’m sure that’s more to do with me!!
The book was by Rachel Hill,it is more an account of her journey to diagnosis, but if I’m honest it’s about all I can cope with right now, as I’m struggling to retain information.
Your Folate would be better in double figures. And your vit D better around 100 - 150. 69.6 may be in-range but it's far too low for a hypo. It's not just about being in-range, it's about being in the right place in the range.
Perfectly normal that you can't retain info right now. The brain needs a lot of T3, so if you haven't got enough to feed your brain, it's going to manifest all sorts of symptoms. It will get better with time. Until then, just check here for anything you need to know.
So, with everything you’ve seen is it worth pursuing the GP for a PA test or just get on with it myself?
Thank you 🤩
Vitamin D
GP will often only prescribe to bring levels to 50nmol.
A few areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Importance of vitamin D for fighting Covid
Zhr1
TIBC 76.74 (45-72)
Transferring saturation 10.74 (20-50)
Ferritin 11.2 (13 -150)
Please see your GP about these results. This looks like iron deficiency. Was serum iron also tested?
Optimal results for an iron panel according to web.archive.org/web/2018083... are
Serum iron: 55 to 70% of the range, higher end for men
Saturation: optimal is 35 to 45%, higher end for men - I presume this is what you mean by "Transferring saturation" and yours is below the range given
TIBC: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is over range so suggests you need iron supplementation
Ferritin: Low level virtually always indicates need for iron supplementation
It's possible you may need an iron infusion as your results are so bad. Whatever treatment you are given you will need monitoring so please ensure that you are retested regularly whilst on any treatment. Also, don't let them give you one course, bring your levels up and then stop treatment. You may possibly need ongoing maintenance which regular retesting will show.
Thank you so much. I have asked GP to call me this afternoon to discuss further.
Great site, very responsive. I appreciate all the comments made 😁
So that went well....not! (RANT COMING).
My GP dismissed the whole blood test, stating it wasn’t a format she understood and therefore irrelevant (Medichecks). However I was lucky as she’s prepared to do B12 check now (won’t accept their B12 result). But nothing else as in her opinion needs consideration as it’s all diet related! (I’ve never been asked for a food diary or even discussed my eating habits). She said she’d not even heard of the MMA test, suggested on the report. I had to argue for parietal antibody test now, as she suggested it could be done if B12 came back low enough. Her response was, I can ask for it but I don’t think they’ll do it (meaning the lab). She said ‘we’ knew your iron was low before, to which I replied it hadn’t been tested since last year, and we only discussed the possibility of low iron based previous episodes and the fact that I suddenly got acute RLS in March/April, and due to lockdown she prescribed ropinerole. If she knew it was low, why hasn’t she treated it? (I didn’t think to ask that at the time).
She agreed that the result for enlarged red blood cells (RDW) as stated on the report was higher than normal, but because the reporting doctor had written it’s not a concern, she was prepared to accept that aspect of the report, but dismissed the rest.
She wants a coeliac screen even though I told her I eat gluten free to support my Hashimoto’s!
She said my TSH can fluctuate, it does it all the time and we don’t know it’s happening. So she not concerned and had I been messing about with my dose recently!!!?
To say I was upset is an understatement. What do I do now?? Apart from bang my head on a brick wall 😩
Oh and did I want to make an appointment for my B12 screen when I feel up to it!!!
Interesting that both GreyGoose and SeasideSusie say it's impossible to go from being hypothyroid to hyperthyroid - wonder what you're basing this on? This has certainly happened to me! I was diagnosed as hypothyroid and was being treated with the usual thyroxine. Some time later I became hyPERthyroid and was diagnosed with Graves' disease. Although it's probably not common it's definitely possible to have BOTH Hashi's and Graves' as I do (there are several other people on another support group with both too). Important to note that not all swings from hypo to hyper are just a Hashimoto's swing. If you continue to get more hyper ZHR1, I'd speak to your endocrinologist and ask for an antibody test for Graves' (TSI or TRAb).
So that went well....not! (RANT COMING).
My GP dismissed the whole blood test, stating it wasn’t a format she understood and therefore irrelevant (Medichecks). However I was lucky as she’s prepared to do B12 check now (won’t accept their B12 result). But nothing else as in her opinion needs consideration as it’s all diet related! (I’ve never been asked for a food diary or even discussed my eating habits). She said she’d not even heard of the MMA test, suggested on the report. I had to argue for parietal antibody test now, as she suggested it could be done if B12 came back low enough. Her response was, I can ask for it but I don’t think they’ll do it (meaning the lab). She said ‘we’ knew your iron was low before, to which I replied it hadn’t been tested since last year, and we only discussed the possibility of low iron based previous episodes and the fact that I suddenly got acute RLS in March/April, and due to lockdown she prescribed ropinerole. If she knew it was low, why hasn’t she treated it? (I didn’t think to ask that at the time).
She agreed that the result for enlarged red blood cells (RDW) as stated on the report was higher than normal, but because the reporting doctor had written it’s not a concern, she was prepared to accept that aspect of the report, but dismissed the rest.
She wants a coeliac screen even though I told her I eat gluten free to support my Hashimoto’s!
She said my TSH can fluctuate, it does it all the time and we don’t know it’s happening. So she not concerned and had I been messing about with my dose recently!!!?
To say I was upset is an understatement. What do I do now?? Apart from bang my head on a brick wall 😩
Interesting that both GreyGoose and SeasideSusie say it's impossible to go from being hypothyroid to hyperthyroid - wonder what you're basing this on?
Scientific fact.
I was diagnosed as hypothyroid and was being treated with the usual thyroxine. Some time later I became hyPERthyroid and was diagnosed with Graves' disease.
So, on what did your doctors base their diagnosis of Grave's disease? Did they test the TRAB or TSI antibodies?
Although it's probably not common it's definitely possible to have BOTH Hashi's and Graves'
That is true. But, as far as I know, one has to be dominant. If the Grave's is dominant then you won't be swinging between hypo and hyper, you'll be going from hyper to euthyroid. If the Hashi's is dominant, then the thyroid will be slowly destroyed so won't be able to do truly hyper, with the high levels of thyroid hormone that you see in Grave's.
And, it's also important to note that you cannot base a 'diagnosis' of hyper simply on a low TSH. Zhr1's thyroid hormones were still in-range, so hardly hyper at all.
Thank you for getting back to me. Am I right in thinking from the results I’ve posted that there IS a possibility that I have PA and should push for a test? I don’t understand how any doctor can ‘dismiss’ a blood test. The results are based on pmol/L not pg/ml, but I found a straight forward conversion chart online, converted the B12 result and compared it to the guideline range which stated <200pg/ml (mine converted to 157.8pg/ml), was consistent with Cbl deficiency. Does that sound right or have I got confused?? Is serum cobalamin they same as active B12, which is what’s reported on on my form? Obviously I need my facts right before I can argue my case! 🤯
She dismisses the results because she doesn't understand them. They don't like you doing your own tests, anyway. They feel it under-mines their authority. They haven't yet understood that they don't have any authority! You are the customer, so to speak, and they are the service provider. But, they still think they're gods.
You don't need a converter, that's silly. You just go by the range. Every blood test has a range, whatever the units. You interpret the result according to the range. That is straight forward common-sense. But, doctors aren't noted for their common sense. So, if your result is low in range, then, yes, you need to push for PA testing.
Cobalamin is just another name for B12. A serum test is testing total B12, not all of which is available for use by the body. An active B12 tests just the B12 that is available for the body.
Thank you, you do explain things really well. And yes, that’s what I thought regarding the results, but just to be equally as pedantic I thought I’d convert it to her preferred option, really to prove to myself I could and to review the result to confirm I’m still right!!
Thank you again and I will keep you posted as to the outcome. A well-worded email to the surgery practice manager may also be necessary.
eachpeach
Interesting that both GreyGoose and SeasideSusie say it's impossible to go from being hypothyroid to hyperthyroid - wonder what you're basing this on?
Basing it on patients who are hypothyroid for reasons other than autoimmune thyroid disease which is not the same as you nor the OP.
Although Hashi's is the most common cause of hypothyroidism (about 80% I believe) there are plenty of other reasons why people are hypothyroid.
I pointed out that the OP had Hashi's, as did greygoose , that she would experience swings from hypo to "false" hyper because symptoms and test results fluctuate with Hashi'sand this is not "hyperthyroidism" just the natural course of Hashi's.
As you are hypOthyroid it's a physical impossibility for your thyroid to suddenly regenerate and you become hypERthyroid
Still not entirely clear about what you're saying? I was diagnosed with Hashimoto's (autoimmune thyroid) and was hypothyroid. I was treated for this for several months. I then developed Graves' (also autoimmune thyroid) and was then hyperthyroid.
I see a lot of comments telling people that it can't be Graves' disease if you are hypo or have Hashi's and your thyroid levels go up (this was said to me when I asked for advice). Although it may not be common, it's important that other people realise that it IS possible to go from hypo to hyper and that you can have Hashi's and Graves'.
As explained, when we say if you are hypOthyroid your thyroid can't regenerate and you become hypERthyroid. We are not talking about autoimmune disease, we are talking about non-autoimmune thyroid disease (and plenty of us have that).
With Hashi's you can get "false hyper" when the autoimmune attack happens.
If you also have Graves then that would be confirmed by testing TSI/TRAb antibodies (which many doctors don't do then give incorrect diagnosis) so yes, of course, you will be hyper.
So it's important that members give us full information, and especially if it's autoimmune we need to know which antibodies have been tested.
Hi Zhr1
"had i been messing about with my dose recently?"
If you go nosing about on GP's help sites like i do frequently, you will find that ;
ALWAYS the first suggestion to explain 'puzzling' Thyroid Function Tests, is "is the patient compliant with medication, ask if they forget to take it sometimes?"
The possibility of the autoimmune element causing ups and subsequent downs is never mentioned, which is a ridiculously poor lack of information to give the GP .
They might have spent an hour on the whole thyroid subject at med school. (if they were lucky )
Autoimmune disease is by far the most common cause of thyroid dysfunction nowadays and appears to be on the increase.
So they really ought to know this stuff.......... but it's much simpler to just assume Patient is fiddling about or forgetful. Than to listen to patient . Or to go away and learn more about it.
And so here you are , along with the rest of us , doing an unexpected period of Further Education in Thyroidolgy.
p.s
I'm not sure Thyroidology is actually a subject, or if i have made it up....... but it certainly should be, and the fact that it isn't is exactly the problem.
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