Ihave been talking Levothyroxine for 20 years, 100-125mcg on average. My TSH levels swing wildly from 0.05ml/UL to 16.9ml/UL but my T4 is always pretty steady at around 16pmol/L. I had my Anti Thyroglobulin Abs & Anti TPO Abs checked (by accident) - they were 17 U/ml and 119 U/ml respectively. My understanding is that they indicated autoimmune thyroiditis and I assumed that meant Hashimoto’s. However, my locum GP mentioned Graves as a possibility. So I am confused - is Graves something to consider?
To confirm Graves you'd need TSH receptor antibodies (TRAb) and/or Thyroid-Stimulating Ommunoglobulin (TSI) antibodies tested.
With Graves you'd have TSH going suppressed and FT4/FT3 going well over range.
The fact that your FT4 stays around 16 and your TSH is detectable doesn't suggest Graves. I think it's your locum GP who is confused and that everything points to Hashi's. You wouldn't have been on Levo for 20 years if it was overactive/Graves.
Crikey tattyboogle hasn't the saga of how badly hypothyroidism is frequently treated not yet knocked the stuffing out of your optimism ? 🤣😂😁 Am impressed!!
Twice in my life i've come across intelligent thoughtful GP's who went away and did their homework, thought about it, and came up with a solution ... so i'm always on the look out for another to add to my collection .
Wow you were lucky. None of my GPs have had a clue. The best I've ever got is a willingness to follow what is recommended by the specialist. Not all do even that... Lol.I'm sure too my file is tagged with a warning on it these days!! 🤣
lol , they weren't both mine , that would be greedy .....one of them was my dad's .. he figured out why he kept coming out in sweat and then falling over .... something called dumping syndrome .. all the others just wrote him off as a drunk .
Awww ure poor Dad.... How awful. I hope he got sorted out in the end.I used to think GPs were good for infections and obvious dramatic stuff...... But then one day I broke the major bone in my leg just walking on it (due to severe lack of vit D as can't tolerate any sun.... GP said I didn't need to take vit D back then I trusted GPs ). Anyway GP said my classic symptoms of a bone breakage was due to an infection.... Strangely antibiotics didn't fix it. She then said it was an anomali!! Still didn't act & sent me on my way. Pharmacist said I reckon uve broken it. Sure enough x ray & radiographer said that too BUT a&e consultant said oh no it can't be broke because u can stand up & sent me home!! 3 weeks later metabolic bone Consultant was furious said its broken, need setting & we may have to rebreak to get it straight. You couldn't make it up..... Basic meds & the x ray also told them. Can't think why I haven't trusted them since..... 🤔
Hahaha! I just heard this story from a patron at the library I work at: She dropped a hammer on her foot and went to see a doctor, who told her she had gout. She insisted that she did not have gout but dropped a hammer on her foot. The doctor got hopping mad at her and handed her a prescription for gout. She said she would take the meds if he tested her for gout and if that test was positive. Then she went to a different clinic specializing in muscle and bone issues and was diagnosed with a fracture. Just to be on the safe side she asked whether it could be gout. The doctor laughed and asked what gave her that idea. And no, it was not gout. We can laugh about these things, but in reality this is pretty sad, if not scary.
You hope it's a one off but then u hear its not!! They do a minimum of 5 yrs at med school but the basics still pass them by.... Surely the clue was when she said I dropped a hammer on my foot?!!! For me metabolic bone consultant (old school with dicky now tie) after I'd got my cast on then treated my appalling level of vit D. It was 3! He gave me 100,000iu vit D per month for 3 months which I had to go to the hospital in person to be given. But the nurse miss understood & wouldn't give me the 2nd dose. Consultant denied this & more or less accused me of lying. He brought up his screen to show pathway of my increases to prove his point.... & oh dear it did increase but then dramatically dropped because as I'd said I didn't get the second dose. He quickly switched the screen off. No apology.Honestly I despair.... Watch them like a hawk is my motto!!
Thank you - I’ve been hyper recently - TSH 16.9, highest it’s ever been - and I do not like it! I literally wake up jittery and shake & sweat my way through the day . But that has happened after a 25 mcg reduction in Levothyroxine, hence the confusion on my part at least.
• in reply to
oops meant dropped from 16.9 to 0.05 highest to lowest!!
A significant % of people with Graves Hyperthyroidism will also have raised TPOab and/ or TGab ,as well as the antibodies that cause their Graves , so having raised TPOab / TGab does not rule out having Graves.
There are different sorts of TRab , and they have opposite effects :
'Stimulating' TRab ~ these mimic the action of TSH and over stimulate the thyroid to make too much T4 /T3 , causing Graves Hyperthyroidism.
'Blocking' TRab ~ these block the action of TSH, meaning the thyroid is not asked to make enough T4/T3 causing an unusual type of hypothyroidism .
It gets a bit complex , but presumably since you are hypothyroid not hyper thyroid, then the 'blocking' sort are what your GP was wondering about (if you had lots of the 'stimulating' sort you would be hyPERrthyroid with too high T4/T3 even without taking any levo)
... i will add links to some further reading to help you understand in a minute .
Thank you for these - really helps to ve pointed in the right direction, I ve been Googling endlessly and am more confused than ever. the TRab info is so great, really appreciate both of you highlighting that.
just in case you are not aware .... hashimoto's can also produce temporary 'hyper' swings .
These are not the same as the true/ continuous hyperthyroidism you get from graves. True hyperthyroidism is continuous over production of T4/T3 by the thyroid gland (driven by Stimulating TRab) and needs antithyroid drugs( carbimazole) to lower the thyroids production of T4/T3.
Hashinoto's hyper swings happen when the thyroid is attacked by the immune system ~ and as a result it releases a bunch of ready made T4/T3 (that was stored in the thyroid tissue) into the blood ..but these high levels of T4/T3 will go down by themselves as it gets used up .
Both will cause Hyper symptoms , and both will show high fT4 / fT3 levels , and low TSH levels on blood tests ,..... but true hyperthyroidism will tend to have much higher fT4 /fT3 levels than a hashimoto's swing .
True hyper may have fT4/ fT3 levels 3 or 4 times the top of the range eg 60/70 [12-22] .whereas hashi's hyper swing may only have eg 25/30 [12 -22]
I had a rough idea but hyper is a whole new experience for me - I cannot even imagine how intolerable the levels you quoted must be ! Really appreciate all this info, thank you.
This is of interest as I went severely hyper 2yrs ago and by the time of seeing endo gp had drastically reduced levo. But no idea as to why I'm fluctuating again and my gut feeling was I need the antibodies testing again. I was only led to believe there was one type of trab. These may be temp swings and gp is monitoring but it's worth discussing
If you'd gone severely hyper then your GP should have told you to stop taking Levo and/or T3 and/or NDT altogether. Depending on what happened in the days and weeks after that, you would probably have had to restart Levo or your other thyroid hormones at some point but with a reduced dose.
They dropped it under careful supervision and loaded with the head of endocrinology. Unfortunately actually being seen was a different matter and the person who trashed my referal downgraded my referal to non urgent. Then when I was seen the Dr was incompetent. To the extent that it was witnessed by a student Dr who backed my complaint. ( telling me an out of date ct scan for instance taken in relation to another condition was an mri and showed my pituary gland which it didnt) couldn't even correctly describe the cycle. I saw a different Dr at another hospital who got it stable. But it's started fluctuating again. So we are being very careful. I've been looking at the trab research . This could well be the answer so have asked if it's worth looking at the antibody activity.
My Vit D is 87 nmol p/L (up from 39 nmol/L in Feb 23.)
Was expecting it to be higher as I had been taking 5mg daily (prescription) for 3 months. I am taking 100mcg now as GP have stopped prescription now I am in normal range.
My folate is 6ug/L. I take 1mg Folate L methylfolate daily
My ferritin is 16 ug/L. I take Spatone sachets 3 a day which apparently provides 15mg iron 240mg Vit C.
I have been on the same brand Levothyroxine for ages - Accord.
I don’t eat dairy products though haven’t attempted to cut out gluten.
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) rather than just folate
This can help keep all B vitamins in balance and will help improve B12 levels too between injections
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
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
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.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Hello, sorry, thought I had replied to this - my brain really is fried just now. My ferritin genuinely is a mystery - I had cancer a few years back and as a result, my periods ended when I was in my 30s. I'm not vegan/vegetarian, eat lots of iron-rich foods although liver is definitely not on my menu. Occult bleeding has been investigated 4 times, most recently this year with a colonoscopy and last year with a gastroscopy. My GPs have decided it's just normal for me. Not great.
My ferritin is 16 ug/L. I take Spatone sachets 3 a day which apparently provides 15mg iron 240mg Vit C.
Just to give you a comparison...
I had very low ferritin and serum iron, and in order to raise my iron I was taking ferrous fumarate 210mg, 1 tablet, 3 times a day. This provided 69mg iron per tablet, thus totalling 207mg per day. This was several years ago, and I don't think I would recommend anyone doing this today.
There are lots of iron supplements available in the UK. Even the ones that doctors prescribe can be bought without prescription from pharmacies with the pharmacist's permission.
More recently, apparently, quite a few members have been doing well with heme supplements to raise their iron and ferritin.
You might want to read this reply to another member on the supplements available in the UK:
If I had my time over again I would get an iron infusion done privately. I'm way past menopause so with a diet which contains meat my iron and ferritin levels should be self-sustaining. But to get to that point where I could stop taking iron tablets and my iron and ferritin would stay where I wanted them took me seven years with tablets.
Thanks for your reply. Bizarrely, I too was on that 3 x 210mg ferrous fumarate regimen - in 2020, just as the country went into lockdown; I'd had a routine FBC plus thyroid iron ferritin etc., and almost everything was abnormal. There was no chance of seeing my GP for investigation or a referral, obviously, so they just prescribed a ton of ferrous fumarate!
After 18 months (Sep 2021) my iron had gone from 5 to 12umol/L. So I gave up - the pain, cramps, constipation, and nausea were not worth it! I've been taking the Spatone ever since (drop in the ocean I realise) while eating masses of iron-rich foods. Still get some cramps etc., but it's tolerable.
Thank you, too, for the super helpful links. Iron/Ferritin have been an issue since I was a teenager & I'm 53 now! I have tried a host of prescribed and OTC products but not the heme ones. My poor Mother used to have to get regular iron injections back in the 1980s or so - which I assume is very much a thing of the past. I'm going to research infusion I think.
Once the serum iron was normal, the GP wasn't interested. It was 13 umol/L last August but has not been checked since then. GP Practice is very arsey about what they consider unwarranted blood tests & sometimes I lose track/haven't the energy to argue! Seeing a GP on Friday face-to-face about the TSH result, so maybe I'll try to get some advice or a blood test.
Thanks for everything, greatly appreciate everyone who shares knowledge and assistance.
I don't know whether parenteral iron covers just the kind of injections given decades ago (do they still use them I wonder?), or whether it also covers modern iron infusions given by private companies, or both.
My mother had iron injections decades ago. In her case they were given into the buttocks, and she told me later in life that they were excruciatingly painful at the time of administration, and afterward she felt like she'd been kicked by a mule. They also produced amazingly impressive bruises.
I have heard of people on the forum using this place in London for iron transfusions :
If you register via email with Medichecks and other testing companies they will (probably) send you info on their sales/money-off offers. Unfortunately you've just missed 20% off Medichecks prices.
If you decide to get an iron infusion I would suggest getting an iron panel done within a few days of getting the infusion, then re-testing once every month or two so you get an idea of how quickly your levels drop.
Because I used tablets and my progress was extremely slow I found out after a while that I only needed to test twice a year. But for people who have infusions I would guess that change would be quick and so testing would need to be done a lot more frequently.
Having high levels of iron and/or ferritin is not good for one's health.
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though haven’t attempted to cut out gluten.
Was told I have Graves’ disease 
Blood test results - advice please.
Blood tests, results and understanding
Hyperthyroid and Graves preparing for endo appointment!
