I am here to say hi and that I am not feeling very well at the moment and feel very alone. Thanks for letting me join
I was diagnosed hypothyroid 2013 but I don't know whether I am hyperthyroid or hypothyroid because my bloods are constantly changing. Currently taking 50mcg Levo.
TSH 0.03 (0.2 - 4.2)
FREE T4 25.6 (12 - 22)
FREE T3 4.0 (3.1 - 6.8)
THYROID PEROXIDASE ANTIBODY 398 (<34)
THYROGLOBULIN ANTIBODY 233.5 (<115)
FERRITIN 15 (30 - 400)
FOLATE 2.2 (2.5 - 19.5)
VITAMIN B12 156 (180 - 900)
VITAMIN D 30.2 (25 - 175)
RBC 4.42 (3.80 - 5.80)
WBC 7.12 (4.00 - 11.00)
HAEMOGLOBIN ESTIMATION 112 (115 - 150)
IRON 4.7 (6.0 - 26.)
TRANSFERRIN SATURATION 12 (12 - 45)
HAEMATOCRIT 0.40 (0.37 - 0.47)
PLATELETS 250 (150 - 400)
MCV 80.5 (83 - 98)
MCHC 376 (310 - 350)
MCH 28.2 (28 - 32)
When diagnosed hypothyroid
TSH 34.6 (0.2 - 4.2)
FREE T4 10.2 (12 - 22)
Thanks for replies and advice and support
Written by
Emmz112
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No need to feel alone, if you have a thyroid problem then you're in good company.
It's late and most of us are off to bed (we are UK based) so you may not get many replies now. But if you give as much information as possible, say what your diagnosis is, post any thyroid test results you have (include reference ranges as they vary from lab to lab), any nutrient test results, say what thyroid meds you're on, if it has changed over time and why, then members will respond. Also, mention any other medication you may be taking for any other medical conditions.
So post your results and members can clear that one up for you.
My guess is, if you were diagnosed hypothyroid back in 2013 then you were hypothyroid, your TSH was high/over range and your free Ts were low.
If you are wondering whether you are hyperthyroid, I'm guessing you have raised thyroid antibodies and that these are causing fluctuations in your test results and symptoms.
So, as mentioned, post as much information and test results as possible and we can comment.
There's your problem. Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted during these periods as necessary.
This is the reason why you don't know if you hypothyroid or hyperthyroid. You are hypothyroid, as confirmed by your original results now showing, and you can't be hyperthyroid if you have been diagnosed hypo, it's the antibody activity that's confusing things for you.
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.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. 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. Supplementing with selenium l-selenomethionine 200mcg daily can also 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. You haven't said that you are taking any supplements so I assume you aren't.
FERRITIN 15 (30 - 400)
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months.
You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
Low ferritin can suggest iron deficiency anaemia, and these results confirm it:
If you are not being treated then you need to ask your GP for the appropriate treatment - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines): cks.nice.org.uk/anaemia-iro... How should I treat iron deficiency anaemia? •Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible). •Treat with oral ferrous sulphate 200 mg tablets two or three times a day. ◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets. ◦Do not wait for investigations to be carried out before prescribing iron supplements. •If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian. • Monitor the person to ensure that there is an adequate response to iron treatment.
Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
You are folate and B12 deficient. Check for signs of B12 deficiency here b12deficiency.info/signs-an... then please post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting folate/B12/ferritin/iron deficiency information and include any signs of B12 deficiency you may be experiencing from the list linked to.
You will need intrinsic factor antibodies testing, you may have Pernicious Anaemia and you may need B12 injections, you will also need folic acid prescribing for the folate deficiency. Don't start the folic acid until further investigations have been carried out and B12 started.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend: "In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment." And an extract from the book, "Could it be B12?" by Sally M. Pacholok: "We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550". "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
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VITAMIN D 30.2 (25 - 175)
You are 0.2 away from needing loading doses of D3 so I would ask for them - see NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d... "Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L. For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)." Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3 vitamindcouncil.org/about-v... D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds. Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn... Check out the other cofactors too.
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Your gut/absorption problems need addressing so that nutrients can be absorbed and once levels are optimised thyroid hormone can work. Please check out SlowDragon 's reply to this post for information and links to help healthunlocked.com/thyroidu...
This is a new game that endos are playing. They are so ignorant of treating hypothyroidism and Hashi's (because most of them are diabetes specialists and don't know much, if anything, about thyroid disease), so to cover their ignorance they start blaming the patient. Favourites are non compliance regarding taking medication, another is the patient is abusing their medication.
You would be better off ditching this endo, s/he can't help you.
Honestly, they are so dumb, you wonder who ties their shoe laces for them!
How could you be over-dosing when you were just taking the dose that he prescribed! If you were over-dosed, it was his fault, not yours.
Were those the results he was talking about, above? You're not over-dosed there, because your FT3 is below mid-range. If you were over-dosed it would be above range.
Your FT4 was over-range, but that was because you weren't converting it to T3 - often happens when you have Hashi's.
If he'd had half a brain, he'd have understood that you are a poor converter, reduced your levo and replaced it with a little T3. But, of course, it's far easier to blame the patient, than to actually do your job!
Get rid of him, he's a moron, waste of good oxygen. Either find yourself a better endo, or learn to self-treat.
Yes he meant the results I posted, I was doing fine on T3 and levo combi until he came along and took the T3 away. Is it affordable to self treat with T3? Thanks
And removing T3 is another reason your nutrient levels are so awful.
Is it the endo who prescribed T3 originally the one who removed it? If you have shown a clinical need for it and done well on T3, then what reason was given for it's removal? You should not have to source and pay for your own T3 if you have shown you need it.
No different endo prescribed it to me. I had intended to go back on the T3 after seeing this other endo but I'm constantly worried about results showing suppressed TSH and him finding out. It was removed because he doesn't support it like my previous endo did
So, so wrong for one endo to remove what another endo has prescribed when you've proved you have a need for it.
As for suppressed TSH, TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
Such a shame doctors seem to have had an information bypass where TSH is concerned.
You don't need to be worried about overmedication, if your FT3 is in range you aren't overmedicated, regardless of where your TSH is.
Please don't be worried and anxious about the opinion of the stupid endo! This forum is full of people being terrorised by idiots of late! God only knows what's going on out there! As very knowledgable members have said, the TSH is mostly meaningless (read info around the forum) and he is just trying to remove meds from you that we're working perfectly well due to financial constraints it seems ~ I can't imagine any other reason for it. If he doesn't know how thyroid problems manifest themselves and can't understand your blood results, I wouldn't waste another minute on the fool! I certainly wouldn't stress myself out and reduce meds and make myself ill! You have had excellent replies, please take note of them all ~ it may take a while to repair the deficiencies, etc., that he has caused, but at least you have found this forum, which will help you if you end up having to go it alone like so many others. Don't worry, if you learn everything you can about hypothyroidism and ask questions if you need to, you will get your health back.
I just think it's tragic and a disgrace that sick and vulnerable patients are being treated this way! Good luck and stop worrying about the endo ~ look after YOURSELF!
The tw@t - oops sorry we are seeing a lot of patient blaming at the mo. as docs struggle to try & reduce costs... (grr... x2)
You don't know if you're hyper or hypo because you are experiencing the usual up & downs associated with having autoimmune thyroiditis (aka hashimoto's) as evidenced by your antibodies...
"THYROID PEROXIDASE ANTIBODY 398 (<34)
THYROGLOBULIN ANTIBODY 233.5 (<115)"
So - options:
Have a good read on here & our main site Thyroid uk.
I've only checked a few - but you vital minerals are low - why is that - are you not eating?
Of course you are! just your body isn't absorbing them - ask for a coeliac check (not reliable but evidence nevertheless).
Remember "Normal" levels apply to healthy folk and we are not - hence why the thyroid is shutting us down for the winter!
Apparently, testing for coeliac isn't that reliable. And if it does come back negative, and you're not coeliac, you can still be gluten intolerant/sensitive. Removing gluten from you diet can help reduce the antibodies regardless of whether or not you're coeliac.
Welcome to the forum. You have had a lot of things thrown at you but lol listen and learn, it's a steep learning curve and if things are corrected right then you may not even need T3! You are hypo thyroid as your FT3 is low and this is often the case when minerals and vitamins are low which is very common for us. So SeasideSusie's advice is vet important to follow. It can take time though to do this if levels are very low but it's worth the effort as not only do low reading hinder the very important conversion but at a decent level some of your symptoms will hopefully disappear as well.
The Thyroid Uk site is full I've other useful info that helps us to function better. They run this forum as well. Shout out if anything you don't understand and hopefully you will soon be on the way to better health. Remember things move slowly in the Thyroid world so patience is also needed.
Emmz112 So sorry to hear you are feeling unwell and low. I have been there and also got through it. Not quickly or that easily, but it is possible. You are now about the age when it started for me. You were much younger when you were affected sadly. I would suggest you try to really build up the nutrients in your body to give it the best chance to recover. I didnt stick to docs guidelines, they were too low for me. . I took a powerful, complex, very well put together supplement each day from age 40 when I learned about it, and it helped from day one.
The body can use it all and not keep getting depleted.It made a big difference. Also cut out as much toxic stuff as you can and drink clean water. We are what we absorb. I feel best when I help myself with good supplementation consistently... and enough. If I get a bit lazy it slips away a bit. Even 10g vit C a day may help, although a wider spectrum of trace elements in a good solution would be great. The C gets used very quickly and then gets flushed out. Gluten free helps too.
The stress of feeling unwell uses nutrients up fast and is toxic to you. Stress or past traumas can also use up nutrients and worsen thyroid issues. I know my thyroid is heavily affected by emotional issues. If this is the case for you too, try to get some help or support. That can help you feel better and help you do the other positive things.
I would suggest to keep looking for things that help. I am not convinced doctors are great at dealing with chronic conditions. An endo had no idea that my monthly cycle could affect the thyroid yet to me it was very clear. I lost faith at that point- he had become too specialised to be holistic. I do use them for tests, but then do everything else with nutrition and have had enough success my doctor is happy with it.
Feel free to ask anything I may be able to help with.
Hi...sorry to hear you feel so alone...I feel the same way...due to family problems caused by my abuser......it's an awful feeling, an empty feeling....I have Heamachromatosis (iron overload) and your ferritin levels I think are a bit on the low side although your Transferin us just in the right bracket (that is the stored iron) your results seem to be all over the place.
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