I'm new to this community and need advice as I'm at my word end.
I've been having 2 problems getting a doctor to explain in simple terms why my bloods are always out of range.
The latest being my TSH (16.70 november - 17.34 yesterday) Free TS4 (17,8 within range)
I was until November for approx 15yrs on 150mcg to 175mcg November then the latest 200mcg. The doctor said thyroid is function is normal but the extra thyroxine is for my pituitary gland as it is having to work harder so I'm assuming from this last result it's gotten even more need to work harder?
He wants me to follow up another blood test in 2 month, however the same bloods that came back also said my ferratin had also dropped for a second time so I need more iron medication.
I am also on vitamin D capsules and every CRP and ESR that comes back is elevated. This CRP came back at 31 (normal being 5)
I really concerned about the pituitary gland as my last 2 doctor visits my bp has been 179/95 and 180/98 and all I get is
"It is to he expected with you"
Why? I have chronic pancreatitis and lymphedema and pancreatic induced diabetes, raynauds phenomena and fibromyalgia and I've all of a sudden gotten psoriasis I've never had it before and I'm losing my hair.
I'm lost as I thought this would be the results and diagnosises to confirm Lupus SLE due to all co morbidities.
Can anyone give me any advice please.
My pancreas is a gland
My thyroid is a gland
My pituitary is a gland
I have diabetes
I feel all my glands are being attacked and the worse thing is my sister passed away of multiple organ failure at 41 without a diagnosis but she also had gland problems. Sorry this is a ling one I just want to give as much info as possible.
Thank you
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KyteP
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I wouldn't worry about pituitary gland. TSH is a pituitary hormone and TSH rising indicates pituitary gland is working well.
When the pituitary gland detects low T4 and T3 thyroid hormone it issues TSH to prompt the thyroid gland to produce more T4 and T3. When sufficient T4 and T3 is detected by the pituitary gland it will shut off TSH.
Thyroid function is NOT normal with high TSH on 150mcg and 175mcg. Your GP needs to increase dose in 25mcg increments at 6 week intervals until TSH is 0.3 - 1.0 or FT4 is at the top of range.
90% of hypothyroidism is caused by autoimmune thyroiditis (Hashimoto's). Ask your GP whether thyroid peroxidase and thyroglobulin antibodies were tested and, if so, what were the results and ranges?
When thyroid dose is changed your diabetes level should also be checked as Metformin dose may need adjusting too. Vice versa when Metformin dose is altered.
CRP and ESR are inflammation markers. They are probably high because you have pancreatis and lymphedoma and psoriasis.
Hair loss is likely due to low T4 and high TSH, possibly low ferritin.
Ferritin needs to be >70 for hair regrowth and ideally is halfway through range.
I do have Hashimotos itbwas diagnosed 15ish yrs ago they are also looking for Lupus as everything with glands and organs appears connected but it's getting the positive ANA at the right time.. My doctor called me into the surgery and said àin November my pituitary gland isn't working properly so he needs to increase the levothyroxine so I said didn't he mean my thyroid gland is playing up again he said No my Free TS4 was in normal range and my TSH had increased I have the blood report here but don't know how to put it on. He also said I needed more iron as it had dropped more then I went back for another thyroid function test and was called yesterday saying I needed to go pick up another prescription and up the dose a futher 25mcg to 200mcg daily once again he said my Free t4 was in range but my tsh had risen again so itbwas my pituitary gland and I have been fast tracked to an endocrinologist the end of January.
I'm confused I have so much going on but as for the ESR and CRP I haven't had a normal reading in over 10yrs or more I've asked if it's possible the pancreatitis and lymphedema were present before he said maybe but not that far back because the amount of damage would have been noticed. I'm taking 100,000 units of creon with a meal and 75,000 with snacks the diabetes is related to the pancreas the gastorologist and diabetes specialist said in America they call it type 3c? I'm just even more confused now. Thank you for your advice.
Well, I hope the endo knows more about thyroid than your GP! Your FT4 is in the 'normal' range because you're taking 175 mcg levo, not because your thyroid is working well. If you were to stop the levo, it would soon go down to below range, probably. He has no idea what he's talking about.
Your TSH is very high for someone on 175 mcg. How do you take your levo? Do you take it on an empty stomach, leaving at least an hour before eating or drinking anything but water? Do you take any other medication at the same time as the levo?
Your right about my GP in finding it extremely upsetting every time I'm told my blood results are to be expected for what's going on when I'm not sure anymore myself.
I was actually rang by the doctor to tell me I need to now go on 200mcg daily of levothyroxine now my THS has risen last 2 tests. I'm just confused as one person said my TSH was okay when it's Up?
I am really eager to see the endocrinologist because everything seems gland related, pancreas, thyroid, pituitary and more.
I don't eat with my thyroxine I have it as soon as I get up and can't eat on a morning.
I really appreciate all the advice and support thank you.
'I'm just confused as one person said my TSH was okay when it's Up?'
Who said that? Someone on here? Well, sometimes you do get some people with crazy ideas. But everybody else has said your TSH is too high. A euthyroid TSH is around one. When you're on thyroid hormone replacement, it should be one or under - wherever it needs to be to get your Frees up near the top of the range, or wherever you need them to be well.
Hi Greygoose the comment was left by clutter and it says
"Welcome to the forum, KyteP.
I wouldn't worry about pituitary gland. TSH is a pituitary hormone and TSH rising indicates pituitary gland is working well."
That's why I got confused. Thank you again for your advice as it is becoming worrying how I am feeling do this information helps for me to present at an appointment as one as previously unaware do I very much appreciate the support. I hope you have a good day.
Yes, it indicates that your pituitary is working well, but your pituitary was never in question!
It's your thyroid the problem, no matter what your silly doctor may think. And, a rising TSH proves that your thyroid is not working! So a rising TSH is very much not good!
Thank you again Greygoose can you see why I'm confused lol I have a doctor telling me my pituitary is struggling because my freet4 is within normal range on levothyroxine but because my TSH is rising it's more my pituitary that's working harder? Either way my levothyroxine has started to increase over the last year after 15yrs of same dose and the other gland troubles I'm facing and dealing with its all getting a bit too much and I'm sick of my gp saying "it's to be expected with what's going on" ??? Thank you again
He only says that because he doesn't know what else to say. It doesn't mean anything.
He's totally out of his depth, and he has no idea what he's doing or why. He knows nothing abut thyroid. Of course your pituitary is working harder - it has to, because your thyroid isn't working, and you are under-medicated. But, that doesn't mean there's a problem with your pituitary.
Your pituitary is fine, but your thyroid has stopped working. That's why your TSH rises.
I totally understand now you've explained it in a way a lay person can understand thank you Greygoose. I'm new to a lot if changes going on with my health, I've had Hashimotos for many years and it's been handled mostly by my gp as a level of medication was reached he says was right though I'm not sure about that. It us only because I've been referred and now seeing a gastorologist for chronic pancreatitis and the hospice for lymphedema and a rhuemotologist for autoimmune disorders that he has started checking my bloods more because I'm losing my hair I'm exhausted and for the 1st time in my life having flares of psoriasis. Thank you because you've been a great wealth if information and it is appreciated very much.
But, tell your GP that you'll be the judge of when you're taking the right dose of levo, because you live in your body, and he doesn't! It's not about numbers, it's about how you feel.
Hi Greygoose I actually had a word with the head pharmacist when I went to pick up another increased dose when he was wonderful. First he told me to go to my surgeryand asked to be seen immediately as it warranted an investigation not overmedicated i explained its near impossible to get a phone appointment let aline annemeegencyvat tge monent so he offered his advice to take the dose one as on before my TSH increased and wait for my endocrinologist apt as TSH should not be increasing with extra levothyroxine so thank you so much for your advice it's been a huge help and I feel less concerned now. Thank you
I did Clutter I just got confused when reading other people's comments. Why do you seem upset when I'm just listening to what all members are advising me? I came here for help I haven't said anything against your comment I responded to a comment that said something different hense the confusion? greygoose
I have taken time to read all responses thoroughly Clutter as this is very important to me after losing my sister in similar circumstances and I appreciate yours and everyone who has taken the tine to give a response to my concern/question and it is easy to become confused when given different advice on the matter I was merely trying to get some clarification. But as I said before I appreciate your input.
Great reply from Clutter but also remember that as you are under medicated (evidenced by an elevated TSH), this can impair gut absorption of nutrients & iron.
Also, low thyroid hormone can influence glucose regulation & inhibit insulin production by slowing the metabolism & so discouraging proper blood glucose balance. Insulin is a necessary for proper conversion of blood glucose into energy.
If you eat a diet high in carbs promoting hyperglycaemia (high blood sugar), your blood glucose levels will remain in a heightened state and eventually this will reduce insulin production and receptivity.
Have you had Vit B12, folate & Vit D tested ? ? . Post all results together with ranges (numbers in brackets) for members to comment.
Supplement iron meds with Vit C to aid absorption & minimise constipation but take all four hours away from thyroid meds (which must be taken with glass of water on an empty stomach for highest absorption).
I'm on a specialist soft to wet nutrition plan as I have Esophageal dismotility and if untried to eat anything more solid than mashed potatoes the food compacts and stays in my gullet for up to 12hrs before passing to my stomach. I'm on creon and proton inhibitors and anti nausea medication for the pancreatitis and EP I dont eat anything with/before or over an hour after my levothyroxine and I have to take my iron 4hrs apart from it as all I am allowed to take is my vitamin D capsules I have but D deficiency and pain relief for the pancreas if needed I always feel nauseous on a morning so couldn't eat if i wanted
I will go through all my bloods later after a little sleep and post results/ranges.
I've had vit E & K at gastro & vit D is a regular recurrence.not sure about B12 but I'm sure it will be on report if they did.
I have platelet counts (low red & elevated white blood cells) too as I have reactive lymphocytosis so it's not just the ESR & CRP that's elevated it's also AL
Thank you reallyfrfup123 I've had magnesium mentioned before because my hands and feet spasm then it was put down to something else now raynauds. I'll look them up. Thank you for your advice.
We don't have fT3 so it's not possible to interpret the numbers. GPs often don't request fT3 and even if they do the lab often refuses to do it. Ideally you GP would request TSH, fT3, fT4 and selenium and make it clear they want the fT3 done.
(low selenium reduces T4 to T3 conversion in the pituitary and you see high TSH, high fT4, low fT3).
Thanks again jimh111 this information has been copied and will be discussed with both my gp and endocrinologist. Thank you very much for your advice it's a big help
This is what I've been concerned about as I lost my younger sister but to multiple organ failure and she had similar problems to me and went undiagnosed and I spoke to her the Tuesday she seemed fine I lost her the Wednesday it was traumatic to see what she went through as i sat with her till the end. I'm a bit lost at the minute so hoping with all this advice I can go back informed and ready to ask questions.
Are you taking your meds and supplements separate from your levo? I had lots of problems when i took proton pump inhibitors as it threw all my vitamin levels out.
Yes I take my Levothyroxine on waking on empty stomach and I take my proton inhibititirs mid day before a main meal with other medication that helps the process of food through my gullet to hopefully stop any compaction and reflux. Thank you for your advice though I appreciate all the advice and support I can get.
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