I was diagnosed with “immune disorder hyperthyroidism” in March last year. My doctor never actually confirmed if this was Graves’ disease and seemed reluctant to name it but said with 100% certainty it was caused by an immune issue.
I’ve been on carbimazole &propranolol since then and I am due to have surgery at some point within the next couple of month.
I have however had ongoing issues with very low ferritin levels. The gp doesn’t wish to do anything with them but also can’t offer any insight. Having requested all copies of blood work it is evident that these have never stabilised right from referral . Interestingly my globulin has also repeatedly dipped into the high side whilst my GFR (EPI) has dipped low, alongside my MCH and MCHC.
I’m not really sure what any of this means as general picture and I will discuss this with the consultant when I eventually get to revisit him but wondered if any of you wonderful people could provide some insight?
Hope you are all well as can be!
Thank you In advance
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completemoan
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Do you have any actual results, including reference ranges, that you can post so that we get a clear picture and can try and help. Just saying "low " and "dipped into low side/high side" doesn't allow us to give an accurate response.
Do you have a haemoglobin result and possibly haematocrit?
Have you had an iron panel done?
Your below range MCH and Ferritin suggests possible anaemia, an iron panel will tell you if you have iron deficiency. With those results your GP should have done further investigation and be prescribing/monitoring.
I take multi vitamin supplements on top of this at the request of the GP to help manage iron but with little/no impact.
This would seem negligent of your GP. Your results show more much is needed and the amount of iron in a multivitamin wont be enough to help. Anyway, multivitamins aren't recommended here, this is because:
* they tend not to have enough of anything to help low levels or deficiencies
* they tend to use the cheapest and least absorbable forms of ingredients
* they tend to include things we need to be tested for first before supplementing, eg calcium, iodine, Vit D, iron
* when they contain iron then this affects absorption of everything else, iron needs to be taken 2 hours away from any other supplement (and 4 hours away from thyroid meds)
Thanks for the guidance and this is why I'm so confused. I have only dipped into actual anaemia twice after diagnosis and only minimally which is why I think she recommended an iron/multivitamin and dietary supplement. I was quite severely anaemic before diagnosis (as a result of blood loss from birth) but this stabilised with prescribed iron tablets- so I'm confused why now my ferritin is still low and continues to be low despite me not being officially anaemic and my diet etc. It's like my body just won't absorb it?
Iron is complicated and I don't know the answers. But you can have low ferritin without anaemia, which I do. I am very definitely not anaemic and never have been (I regularly have FBC due to another medical condition which requires regular tests) but my ferritin tends to be on the low side.
I can get my ferritin up to a decent level as long as I eat liver reguarly, so I eat it every week to bring my level up then maintain it at that level, this is what works for me and it doesn't seem to affect the other elements of my iron panel, serum iron and transferrin saturation are where they should be and don't rise, which they would if I took iron tablets.
I was quite severely anaemic before diagnosis (as a result of blood loss from birth) but this stabilised with prescribed iron tablets- so I'm confused why now my ferritin is still low and continues to be low despite me not being officially anaemic and my diet etc.
If you lost a lot of blood as a result of giving birth, there is a condition you need to be aware of :
It would need more testing than you could get from a GP to find out if you have this condition. Sometimes it can take years for Sheehan's to cause symptoms, and you might not have it anyway.
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If you have lost a large volume of blood and weren't given a transfusion then it is possible that it could take a long time to replace all the iron and blood you lost.
I lost a lot of blood some years ago and it took me nearly two years to get my ferritin up to optimal. Unfortunately doctors will usually only check ferritin, and rarely check serum iron. If ferritin is anywhere in range then doctors think it is fine.
The other problem is that if you have been severely deficient in iron/ferritin, (I'm basing this on my own experience so it could be nonsense) the body tends to lose iron/ferritin very easily. Once I got my ferritin up to optimal I started trying to find my maintenance dose, which took a long time. I now take iron all the time but at a fairly low dose. I also do an iron panel test very regularly to make sure I don't overdose on it.
Some links you might find helpful :
Uncovering Iron Deficiency in Thyroid Disease and Why It Matters
Surgery was the course suggested by my endo. I have a 17 month old and ideally would have been trying for number two already. Iodine was not recommended based on my age (28) and having a young child at home. Medication he stated was not ideal either long term so suggested surgery. I’ve posted some levels above too.
My diet is very good and I take multi vitamin supplements on top of this at the request of the GP to help manage iron but with little/no impact. Just wondered if there was any link ☺️
I will just say my Endo suggested surgery or RAI 10 years ago I am glad I ignored his advice because I am now feeling ok at the moment. A lot of people struggle to get the correct treatment afterwards and they now regret their decision so I hope you have done your research before you have the surgery.
I would take only the vitamin you are low in because a multivitamin does not contain enough iron to make a difference in my opinion.
Initial hyperthyroid phase can last several months
Please add most recent thyroid results and ranges
Carbimazole is not the correct treatment for Hashimoto’s
Ferritin tends to be high with Graves’ disease
Vitamin D, folate and B12 often very low with Hashimoto’s or Graves
Never be bullied into irreversible treatment of RAI or thyroidectomy
Many people remain on Carbimazole for years - assuming you do actually have Graves’ disease and not Hashimoto’s
Many patients after thyroidectomy can not manage on levothyroxine alone and U.K. medics extremely reluctant to consider addition of active hormone - T3
Professor Toft recent article saying, T3 may be necessary for many especially after RAI or thyroidectomy
I had my son in July 19' and by November was still really suffering with symptoms which were originally associated with the blood loss I had suffered but my GP screened me for practically everything and my Thyroid was flagged. She referred me on the grounds of "subclinical hyperthyroidism" but sadly I don't have those results. I was not seen by and endo until March 23rd 2020. At that point my results were:
TSH: <0.01 mU/L (0.27-4.5)
Free T4: 33.4 pmol/L (11-23)
Free T3: 13.92 pmol/L (3.1-6.8)
TPO: 58 IU/ml (0/34)
I was immediately placed on 20mg Carbimazole, 10 mg Propranolol 3x daily and back onto desogestrel.
By April'20 the dosage was reduced to 10mg Carbimazole as my results were:
TSH: 0.02
FT4: 10.0
FT3: 4.16
I think they were worried about me then going hypo?
Endo said it wasn't postpartum thyroid toxicosis and was an immune issue. I questioned then which one and he said it was irrelevant as it doesn't change treatment. After seeking advice on here I pressed for a blood test to confirm graves but I never actually received any results directly from him- but having gone digging have found it!
TSH receptor antibody: 1.24 U/L (0-1.74) therefore negative - this was in July'20
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms
TPO antibodies are above range. So confirms Hashimoto’s
As thyroid comes under autoimmune attack, thyroid cells breakdown releasing excess thyroid hormones. This isn’t true hyperthyroidism and Carbimazole is not the correct treatment
Propranolol can be prescribed to reduce the hyperthyroid type symptoms
After each Hashimoto’s attack (flare) thyroid becomes increasingly hypothyroid
Your now clearly hypothyroid
Sounds like endocrinologist was diabetes specialist and out of their depth
TSH receptor antibody: 1.24 U/L (0-1.74) therefore negative - this was in July'20
Confirms NOT Graves’ disease
April'20 the dosage was reduced to 10mg Carbimazole as my results were:
TSH: 0.02
FT4: 10.0
FT3: 4.16
Please add ranges on these results.....they look very hypothyroid
My last blood test from last week was:
TSH: 1.9
Totally inadequate just testing TSH
Insist on FULL thyroid testing....or test privately via Blue horizon
Recommend Blue Horizon as it includes cortisol test. If you have Sheehan syndrome, cortisol may be abnormal too. Cortisol may be abnormal when very hypothyroid any....as you almost certainly are
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised TPO and/or raised Thyroid antibodies
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
So either you do have Graves’ disease and on to high dose Carbimazole
Or you actually have Hashimoto’s - autoimmune HYPOTHYROIDISM
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms and if all thyroid antibodies aren’t tested often mistaken as Graves’ disease
Have you had TSI or Trab antibodies tested to definitely confirm Graves’ disease
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's)or Graves’ disease
Ask GP to test vitamin levels
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Have you now the medical evidence of Graves Disease with over range TSI or TR ab antibodies ?
The laboratory should have followed through with this antibody test for the medical evidence and diagnosis of what disease you have when your thyroid hormone blood test came back as out of range, and needing further investigation, several months ago.
Looking at your ferritin level, it is below the range - has this, or is this, being investigated ?
I remember my ferritin in the low 20's and I couldn't do much at all, so quite how you are coping with a toddler all day - seems like a miracle to me !!!
I'm sorry but I have no experience or knowledge on your other results :
Is there an option to stay on the anti thyroid medication longer ?
What immune disease are we talking about and how would loosing your thyroid gland solve the problem ?
No thyroid hormone replacement works well unless ferritin, folate, B12 and vitamin D are maintained at optimal levels and personally would get try and restore these core strength vitamins and minerals to higher than mid range levels before even contemplating any surgery, whether it be for an ingoing toenail let alone major surgery as planned by your consultant.
Hi pennyannie!My GP says she is just continuing to monitor my ferritin but has given no insight into why this is suddenly becoming an issue- I think because I am under endo care she doesn't feel it warrants her investigation maybe?. A part of me did wonder if Carbimzole was impacting my liver in some way ?
You practically raise the same questions I will be raising. I've received no official confirmation of what auto immune issue I have but if you have a look at my other responses I have posted by antibody results!
I just feel completely overwhelemd with information yet uninformed. I'm also completely out of touch with my body. I have no concept of what is thyroid/iron/general illness/the pill and I lead a very hectic life as a teacher trying to teach in a pandemic! my husband is incredibly worried about the toll it is taking on me physically and mentally but I'm quite numb to it all for the moment. The only reason I'm even having any kind of regular blood test at the moment is because I am arranging them for my own information!
I can completely understand your confusion as it's like a jigsaw with missing pieces :
Being in limbo like this, asking questions and not having anything resolved leaves one exhausted and questioning one's own sanity.
Your baby's birth was difficult and I sense you have been in some sort of a whirlwind with everything that has happened and all that you have been through and just pushed on adjusting to a " new norm " as we all do in such circumstances.
So, in July 2020 a negative Graves antibody test - so I read these can wax and wane but tend to think we are looking at something else, as SlowDragon as mentioned above.
I think it's time to take some time for yourself to get a second opinion, but from someone recommended from the Thyroid uk website, the charity who support this forum.
Should you see your doctor or original thyroid consultant again you must question your diagnosis as without a positive antibody test for Graves you probably shouldn't have even been prescribed the AT drugs and there should be no talk of a thyroidectomy.
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.
All my other vitamin levels have been fine- particularly b12just looking at it at face value it would seem that as my thyroid stabilised under carbimazole my ferritin, MCH/MCHC, Globulin and GFR went a bit wobbly! as these were all fine before treatment. Aside from a slight reduction in mean blood cell and MCH but this was put down to me still recovering from blood loss?
Are you aware that endocrinologists love to either a) give people RAI if they are hyperthyroid or b) will take out thyroids if people are hyperthyroid? The reason they love doing this is because the patient then becomes "Someone Else's Problem". In the case of someone with no thyroid or a thyroid destroyed with radioactivity the patient becomes the responsibility of a GP. This is because the patient is recorded as being hypothyroid and GPs are responsible for those who are hypothyroid.
People who end up with no thyroid usually end up with too little T3, which is the active thyroid hormone that makes people feel well when it is at the right levels for them. Since doctors rarely test T3 the patient and the doctor rarely know about this lack of T3.
A dead/damaged thyroid as a result of RAI tends to produce a hypothyroid condition which is harder to control than a hypothyroid patient who develops it "normally".
Sheehan's Syndrome, which has had several mentions in this thread, is a condition in which the pituitary is damaged as a result of severe blood loss. The pituitary produces many hormones (including TSH - Thyroid Stimulating Hormone), as listed in this link :
Depending on the degree of damage to the pituitary sufferers can end up with one or more hormones being much too low. If your pituitary can't produce enough TSH for your needs then whether you have RAI or you have your thyroid removed you are going to have to battle doctors for the rest of your life to get sufficient T4 and T3 for your needs because they will keep telling you you are over-medicated because of the low TSH.
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One thing you may not be aware of...
If you refuse to have RAI or have your thyroid removed (and this is your right - you can't be forced to do this) then you cannot be denied anti-thyroid drugs by doctors to control your alleged hyperthyroidism and you will remain the responsibility of endocrinologists. They won't like this, but they don't have to live in your body, you do.
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My suggestion would be to refuse RAI or removal of your thyroid until you know exactly what the problem is with your thyroid. The fact that you are considering going ahead with surgery even though you have no idea what is wrong with your thyroid absolutely appals me, and the doctors involved should be ashamed of themselves for not making sure you understand your condition.
If you have some form of hyperthyroidism it can go into remission if you are treated properly, without having RAI or surgery. Life will be much better with a thyroid than without one, unless you have cancer or your thyroid is choking you or you can't tolerate anti-thyroid drugs.
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Ferritin has sat anywhere between 13.1-18.2 UG/L (20-130)
If your doctor has said this is fine "because it has stabilised" then shame on him/her. Just because a result is stable doesn't mean it is good.
Given the reference range you've been given (20 - 130) the optimal level for ferritin is roughly mid-range or a bit over, say, 75 - 100 or 75 - 110.
I don't know if you are aware of this but people can buy prescription-strength iron tablets from UK pharmacies without a prescription.
Personally I take ferrous fumarate 210mg which I buy in boxes of 84. When I was raising my ferritin and serum iron I was taking the maximum dose of 1 tablet, three times a day. Nowadays, now that my ferritin is optimal, and after a lot of experimenting, I take 1 tablet 5 times a week. Occasionally I drop to 4.
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My suggestion of what you need to do is :
1) Find out why doctors want to take your thyroid out (or give you RAI). Ask for advice on the forum what this actually means.
2) Learn what options you have that don't involve removing or destroying your thyroid. Ask on the forum.
3) Get hold of copies of your blood test results and reference ranges from before you got pregnant onwards, then post them here in a new post. We are interested in anything thyroid-related, anything nutrient-related, anything cortisol-related and possibly any Full Blood Count results too.
4) Get an iron panel done - ask your doctor or pay for one privately. Then post those results too.
5) Get your nutrient levels optimised. I'm surprised you can cope with a baby with such low iron.
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You can improve your health dramatically. It will probably take a while, but don't give up. But the first thing you really need to know is what is wrong with you.
I agree ...that is the first thing my Endocrinologist suggested was to either have my thyroid removed or RAI. I think it is too much trouble for them to monitor us all the time unless we pay. I no longer have a Endocrinologist and I do my own private blood tests etc. If I became too hyper I would have to get a doctor involved but even after being admitted to hospital with a suspected thyroid storm in 2019 my GP was not really interested and although he did request a full thyroid function test all he got was the TSH because the labs saw it was in range and refused to test anything else. I have been lucky so far and I am glad I got this later in my life because I don't know what I would have done if I had been a lot younger.
Gosh thank you so much to everyone for your incredible insight. I feel that, even besides all my own research I have done so far I’m still very naive about my own health!I was given two options for treatment long term medication management or surgery. Surgery was encouraged because it was considered the best, safest and most practical option given that I intend to have another child very soon- now I’m not only questioning treatment options but also original diagnosis! Not going to lie but feel like I’m back at square one but really can’t thank you all enough for all your support and info ❤️ I guess putting faith in the knowledge and experience of those qualified in the field doesn’t always guarantee the best outcome!
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