Im on T3 only on my 3rd lot at 28 tablets I take 20mg one per day.. I'm now splitting the tablet but endo wants me to up to 40mg per day... As my T4 is low would I need to add some T 4 to get it within range.... Also my parathyroid hormone is raised to
PTH.. 8.1 pmol/L.. Ranges.. 1.6.. 6.90 pmol/L...
My endos letter to me reads you have a normal T3 level with normal TSH.. Your T4 hormones levels are low which we normally expect as you are on T3 only...
She has not requested any action on the T4 I have done a 24 hour urine test for which I'm waiting on the results. She goes on to say my raised parathyroid hormone could be related to primary hyperparathiyroidism she also said my vitamin D level in February this year was normal it was 250H..70..nmol/L
My B12 was.. 310..ng/L..ranges 197.00..771.00ng/L
Ferritin 26..ug/L..ranges 23.00..400.00ug/L
Folate 2.8.ug/L..ranges 2.50ug/L
All vitamins ect say normal no action
Any help will be much appreciated
Karen
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birkie
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I'm not very well haven't been since my thyroid removal last May.. I'm having tremors bad sweats palpitations, total exhaustion can't walk far or climb my stairs without utter fatigue.. As I said my parathyroid hormones have raised to so I feel something is going on that's making me feel so bad.. 😢
Is it worth adding some levo into the mix then, to see if it makes you feel better? I like both frees to be high in range - but as Lalatoot says, some people are happy for their T4 to go low.
I'd add that, while it may be in range, your free T3 is still pretty low - only 10.8% through range, and your TSH is pretty high for someone taking lio.
If you do raise your lio, suggest you do it slowly, rather than doubling in one go - so maybe 1/4 tablet a day for a week or two, then half a tablet, etc. That way you may also find your sweet spot - and it may not be a full tablet.
Sorry to hear you are so bad. You are on a low dose of hormones and your FT3 is low so that is likely to be adding to your problems. I hope you find answers.
Well, she's going to say they're normal purely because they're in range. I really do have a problem when doctors can't see what's before their eyes.
Take your Ferritin level of 26 and the range is 23-400. Does she really think that someone with a level of 23 is going to feel the same as someone with a level of 400. Well, of course they're not, but why can't they see it? Your Ferritin is a measly 0.8% through it's range. This will be causing you no end of problems.
Low ferritin can suggest iron deficiency anaemia. Have you had a full blood count and iron panel? If not you need them done.
Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present.
However, a ferritin level below 70 does not confirm iron deficiency (you need the iron panel to confirm that).
I have read in one article that females who brought their ferritin level above 100 saw their persistent hypothyroid symptoms relieved, and another article suggests that a level of 100-130 is good for females
◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.
◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.
So as your level is 2.8 (even though the range starts at 2.5) it's below the level that NICE quotes as a guide to indicate deficiency.
Is there a proper range for folate or is it just >2.5?
**
As for B12 of 310ng/L, ng/L is the same as pg/ml, according to 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."
So if I were you I'd check to see if you have any signs of B12 deficiency here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
**
she also said my vitamin D level in February this year was normal it was 250H..70..nmol/L
This is because above 50 is classed as "sufficient". However, the Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. If you want to improve your level to reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with about 3,000iu D3 daily. I think it is particularl important to maintain a good level now there has been shown to be a link between Vit D deficiency and Covid deaths (Deficiency is <25).
Retest after 3 months.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.
D3 aids absorption of calcium from food and Vit 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 such as hardening of the arteries, kidney stones, etc. It is important to be cautious here due to your raised parathyroid hormone level, I don't know enough about it to comment further so it's something you should look into.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium 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 if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Hi seasidesusie ❤️ thanks for that info.. I have mentioned all my vitamin results to my gp but as you say they consider them to be in a normal range I'm still fighting them by reminding them that certain ranges don't suit everyone as you said.. I really want vitamin B12 injections and have asked for these for over 4 months we'll thanks to covid my gp as an excuse not to administer them to me.. We're only allowed in to the surgery if the gp thinks it's important enough. As for the parathyroid hormones I had this condition in 2004 and I was very ill same symptoms to hyperthyroidism I'm waiting on urine test then I will need to ask to be seen by either my endo or gp as I can no longer go on like this..
Check out parathyroid.com. It's an American site that explains why one should not wait to treat. It does not go away, but get worse without treatment.
I had two parathyroid glands removed, and immediately, within minutes, one has NO bone pain. Yet my calcium was never very high in the first place. Still getting thyroid in control.
Sorry for the late reply but I've been trying to contact my endo.. I did a 24hour urine test for her I just wanted to know if she had the results but just been told by her secretary that she has requested more bloods and another 24hour urine test😢 but that's all the secretary could say. I feel she is going for the same old thing that if your calcium is not raised then you can't have hyperparathiyroidism but that's not true a percentage of people can have a normal calcium level with a raised PTH I have a raised PTH level I had this condition in 2004 and they did the wait n see approach only took 2 blood tests one to conferm hyperparathiyroidism and the nxt 6wks later to say my level was normal.. I did however also have raised calcium levels then to.. But no further action was needed so my doctor said.. I've not been right since then and was diagnosed with ME/fibro 18 months later... And now have no thiyroid due to graves disease 😔😔
It's rough dealing with ignorance. As I was being prepped for Surgery for parathyroids, in Tampa, the surgeon double checked that I was sure I wanted surgery since I only had one slightly elevated calcium level. Said what are my other options, and what would he counsel his mother under these circumstances. He laughed, said his mother has the same problem currently. and having surgery. I did too. They removed one gland size of a large Thompson grape. A second just starting to enlarge. and Half of thyroid with large nodules. As I was waking from anesthesia, Surgeon told me results above and said I would have to tell my regular doc that I need thyroid meds since I have Hashimoto's. I saw sky rockets going off in my head!!!! I had been saying could I have thyroid issues? and had been ignored. Jeez!
And I diagnosed both conditions. Okay, while I am on a roll, after my surgery, I was all gungho feeling great. Told each of my 3 kids to have their PTH checked for a baseline. My daughter's came up sky high. Then I learned of her ongoing symptoms she was excusing as "getting older, menopause starting, etc'" She had surgery, two enlarged glands removed and a "funny looking lymph node". 3days later biopsy came up cancer. Pappillary. So after parathyroid surgery healed, she had full thyroidectomy. And I found out her twin has been on NP thyroid for years. Never mentioned it to me. Definitely runs in family, starting with grandma. So it's not necessary to have high calcium and still have hyperparathyroidsm. Try telling that to docs.!! But with high PTH there's no time for "wait and see". If you lived in US I would say get in touch with Tampa docs. Don't know resources in UK.
You always had problems tolerating any levothyroxine.
At this stage suggest you follow Endo’s advice and stick to just T3 and SLOWLY increase T3 up to 40mcg
Adding 5mcg extra per day (cut 20mcg tablet into 1/4’s using pill cutter or sharp scalpel)
So on 25mcg (perhaps as 10mcg waking and 10mcg mid afternoon and 5mcg at bedtime)
Assuming all OK ......Add another 5mcg after 2 weeks
So on 30mcg - 10mcg waking, 10mcg mid afternoon and 10mcg at bedtime
After another 2 weeks (Might need to be longer before increase) ....add a further 5mcg to morning dose - so 15mcg waking and 10mcg mid afternoon and 10mcg at bedtime
And after further 2 weeks add last 5mcg either in morning dose or to mid afternoon dose
You may need to increase leaving longer number of weeks between each increase
Important to work on improving low vitamin levels as listed by SeasideSusie
We need GOOD Vitamin levels on levothyroxine or T3
Yeah the problem with the T4 was lactose... So my T4 is OK at 1.8...as I don't feel at all well but wondering if the parathyroid hormones could have something to do with the way I'm feeling also as you and seasidesusie mentioned my vitamin and mineral levels need tweeked ideally I would like B12 injections also before my total thyroid removal my surgeon prescribed vitamin D in capsules I snapped open and drank I took them for over 7 weeks and can remember feeling better just before the op.. So I'm requesting to have them to.. Just to see if they have the same affect..
Parathyroid tumors cause low Vitamin D, not the other way around, and low Vitamin D cannot cause a high calcium. You cannot treat a parathyroid tumor with high doses of Vitamin D.
...There are two reasons for having low vitamin D. One reason for low vitamin D is not serious and simply means you need to take some vitamin D pills. The second reason for a low vitamin D is much more serious (and less common) and may indicate that you have primary hyperparathyroidism and need an operation to remove a small parathyroid tumor. These folks should not be taking vitamin D until after the parathyroid operation. If you have low vitamin D, you must understand which of these two groups you are in.
See rest of that page for more detailed explanation
My endo as indicated in the letter she thinks it may be primary hyperparathiyroidism this is what I was diagnosed with in 2004..with the wait and see approach I only had 2 blood tests then one to conferm hyperparathiyroidism then 6 wks later my bloods came bk as normal, I had no idea what hyperparathiyroidism was at that time so just thought the docs/ endos know best..... Wrong!!!
Hi slowdragon ❤️ I wonder why my parathyroid are showing a rise 🤔 I'm just waiting on urine results then I'm making an appointment to see either endo or gp...
I took calcium tablets for about 2 weeks after surgery then surgeon told me to stop them... As for vitamin D the endo just went off my vitamin D level in Feb this year which was 70..she said my calcium was OK.. She's wanting the 24 hour urine test to see if calcium is being leached from my bones.. As I said previously I've had parathyroid issues in 2004 which were a wait and see approach I was never well after that and were later diagnosed with ME.. Fibro
I'm following what you have said I did cut the pill in half bout a week ago cud b 2 I honestly don't know where I am.. I'm now adding 5gm...on to the 20gm and splitting in into 3 times morning afternoon, night.. Only small problem is I take my pain meds morning, afternoon, night. How long can I leave from taking the T3 to taking my pain meds... ❤️❤️
Well I'm pleased that you are now taking T3 as you never got on well with Levothyroxine so I think I'd stay put and I read the average person uses about 50 T3 daily, just to function :
BUT - no thyroid hormone replacement works well if vitamins and minerals, especially ferritin, folate, B12 and vitamin D are not maintained at optimal levels:
Just looking at your ferritin I remember all too well how unwell I was with a level of 22 :
Please follow Seaside Susie's excellent advise - these all need urgent attention and if your doctor can't help you with a prescription you'll have to build these up for yourself like I did :
It's like you get one step forward and two back - crazy that there is no joined up thinking:
Suggest you reread SeasideSusie reply below re very low vitamin levels
My B12 was.. 310..ng/L..ranges 197.00..771.00ng/L
Ferritin 26..ug/L..ranges 23.00..400.00ug/L
Folate 2.8.ug/L..ranges 2.50ug/L
Your T3 won’t be working very well until you improve low vitamins
Ferritin is terrible. Are you now on high iron rich diet. Liver or liver pate once a week
Low B12 and Very low folate
Are you now taking daily vitamin B complex
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Yeah I thought they were low I have pointed this out to the endo by email and about the parathyroid glands going overactive.. Unfortunately I'm having trouble swollowing anything at the moment I'm not eating, but trying to keep fluids up I feel sick most days no appetite I've to try to collect the 24hour urine bottle on Thursday and have more bloods done.. 😩
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