Does anyone know where I can find an NHS gp who will increase my thyroxine to get my T4 levels to the upper end of the range or elevated. TSH currently undetectable, T4 is 15 and T3 is 5.1 (currently taking 100mcg thyroxine and 20mcg liothyronine. I really need someone who works in the same way as Dr S Myhill or Dr Skinner. I have tried speaking to my gp and a few others at the practise who will in no way increase it and obsess with my TSH level instead of looking at the full picture. I live in the Brecon area where there is only one GP practice. I am under an Endo at the Heath hospital in Cardiff who prescribed me T3, however is trying to lower my thyroxine dose to 75mcg and ignoring my symptoms. Unfortunately my GP agrees with the endo, who I am not happy with. I received advice from Dr Myhill which was brilliant, and discussed with my GP who still refused to increase thyroxine and wants to lower it! I am fighting this, and was told by my GP that if my TSH is still low next month thyroxine is being reduced to 75 or I will end up with a heart attack. I am sure that many GPs from my practise went to the same 'Neanderthel School of Medicine'. How do I find an NHS gp and/or endo who will not undertreat me?x
GP/Endo recommendations via private messages please in line with posting guideline #24, thank you, Clutter.
Email louise.warvill@thyroiduk.org.uk for a list of recommended private GPs and NHS and private endos in your area.
You aren't undertreated and I doubt you'll find any doctor who will increase your medication. Your FT4 doesn't need to be in the top quartile or over range because you are taking T3 orally and bypassing the need for high levels/storage of T4 to convert to T3. Your FT3 is good and 5.1 is towards the top of most ranges I've seen.
Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges in a new question and members will advise whether supplementation is required.
Am also hypoparathyroid and on Calcoes. Been on these the last few years. Also, had recent ferritin, folate and B12 serum (was 559). Am waiting for test pack to come so that I can have Active B12 test, though GP disagrees with this as well. Not got the results to hand for the ferritin and folate, though can post them once find them.
Don't think am overtreated, am still having hypo symptoms. Was diagnosed hypo in 2009, though had symptoms for years with normal blood results.
Pinkgirl, actually you could consider the possibility that the combination you are taking is resulting in a lot of rT3 production. If your private test kit contains a test for this, it might enlighten as to what is going on.
If you reduce your T3 you may also reduce your rT3. Your body may be blocking the full effect of the T3 you are taking. Other than that, on the face of things, I agree with Clutter. Unfortunately hormones are more complicated than aspirin. There is not always a simple dose-response curve. The body can have ideas of its own for whatever reason.
What is the history of your thyroid treatment? Where did you start in 2009 and how have dosages been modified over that time? How did you feel at each step?
I've got very similar fT3 and fT4 as what you have but my TSH is 0.5. I take less T3. The only thing that didn't benefit is my back pain. I thought with better metabolism, this pain would begin to clear up. Such is not the case. So I'm trying big doses of magnesium glycinate at this time. I had two really good days this week punctuated in the middle by an awful day. The jury is out big time on this. But when nothing else helps, what's the harm in trying something like magnesium? Worst case scenario => diarrhea. (not happened yet).
Hi, I was originally put on Thyroxine only back in July 2009. I remember the exact date as it was my birthday lol. I began on 25mcg and this made no difference and was also severely anaemic and on ferrous fumerate of 210mg 3 x daily. The anemia was due to endometriosis, fibroids and I had non stop bleeding every day for 3 years with flooding ect and in Nov 2011, I had a total hysterectomy. At that point in time, I didn't know what the readings were. I then increased to 50mcg around 6 months later, and then to 75mcg. After looking on line and reading more and more about hypothyroidism, I began asking for readings. Started taking readings in Feb 2012 which are as follows:
Feb 2012`
Thyroxine 75mcg
TSH 0.12
T4 16.9
T3 Not checked
On this I still had symptoms. I didn't question it and thought that in time that things would improve. My next results were:
09/03/2012
Thyroxine 75mcg
TSH 0.17
T4 16.9
T4 Not checked
I was having tests done quite often as a result of moving house every 6 months as I was going where ever work was so as I would end up out of gp catchment areas then end up registering elsewhere.
The next results I had were as follows, and the gp was not happy about doing my T3 bloods. Though, as I said I was going to go private, they reluctantly did the T3 test which produced the following. The gp also did not care about ranges and said that thyroxine would be reduced on blood results.
13/072012
Thyroxine 75mcg
TSH 0.52
T4 18.6
T3 3.6
I then moved house again, and changed to another gp practise who were really good. All the gp there were very supportive and one let me increase my thyroxine dose to 100mcg. I had increased it myself for a few months and told them that I had did this and was feeling a lot better. Also, I was in the process of being referred to a very good thyroid doctor in England but they could not take NHS, however, I could have gone private. Being in part-time work, private wasn't an option, so agreed to be referred to an endo in Cardiff as I was living there at that time. Also, at this time, I was craving coke and drinking it in the mornings before I had even left bed, so that the caffeine would keep me going for work. Was taking the thyroxine with water first though. I looked up coke cravings on line and saw that it suggested calcium deficiency and also I was still plagued by extreme fatigue. In my next appointment with the gp, they took bloods for parathyroid and found that vit D was extremely low and put me on calceos 2 x daily. Also, at this time I was referred to the hospital for a Short Synacten Test which resulted at 527 (endo says this is peak?)
Feb 2013
Thyroxine 100mcg
TSH 0.02
T4 21.1
T3 Not checked
After seeing the endo I had bloods taken, which produced the following result:
13/06/2013
Thyroxine 100mcg
TSH 0.03
T4 19.9
T3 4.6
Looks like the thyroxine increase to 100mcg alone had increased my T3 levels which were 3.6 before. Endo gave me a trial of T3 liothyronine 10mcg which produced the following result
May 2014
Thyroxine 100mcg & Liothyronine 10mcg
TSH 0.01
T415.1
T3 5.1
Initially, I felt better, then worse as T4 has dropped from 21 (was starting to feel more normal when it was 21, though think it could have been raised from that).
Saw endo again and asked for an increase of T3, which was agreed to and it increased to 20mcg which, I am currently taking, however, endo said to decrease thyroxine to 75mcg. Did this, but only lasted a month as symptoms recurred. Slowing down, more hair falling out (though hair stills fall out and has been falling out for years). Also, severe constipation, IBS and first degree piles and bladder leaks (am under a different hospital for these, though think there are links with thyroid. Also, very dry skin probs (been taking Primrose oil and omega 3,6,9 for years - does not improve skin, but eased PMS and helps after hyster as still have both ovaries). Also, I had 2 ovarian cysts which were surgically removed - one back in 1999 - which I have been told are linked to thyroid. I have a very strong family of hypothyroid and other autoimmune conditions. Biggest issue, I have is fatigue and bowel/bladder problems, brain fog ect which interfere with work ect and also 'growing pains' in legs.
Anyway, I could not function on 75mcg thyroxine with the 20mcg liothyronine so increased it myself back to 100mcg. Then, I went back to gp in area where I currently live (no longer in Cardiff) and asked for thyroxine script as ran out. Gp refused to give me any thyroxine at all, and was horrible to me as he was running an hour late, and told me that it was down to patients like me. I left there in tears, went straight to reception and asked to see a different gp, which was granted. The other gp was very good and listened to me, however, was straight out of uni and work was being overseen by one of the partners who I had already seen). This one requested bloods which gave the following result:
25/07/2014
Thyroxine 100mcg & Liothyronine 20mcg
TSH Undetectable
T4 15.3
T3 5.1
However, was given script for thyroxine.
Was so upset by previous gp that complained to the practice and they said to book in with one of the other partners, which I did. Saw doc and took bloods for B12, folate, ferritin, gluten allergy due to strong family history of various anaemia's. Tey didn't do thyroid bloods, though had asked for the thyroid anti bodies one. Gp did say that, that one should have been done when first diagnosed.
Here's the results for the others:
B12 serum 556 (range 180 - 900)
Folate 6.2 (greater than 6.2)
Ferritin 217 (range 15 - 300)
Gluten 1.7 (range 0.0 - 10.0)
GP said that these were normal.
However, on looking at info on Thyroid UK, I said that B12 should be upper end, more than 500. I am borderline with B12 in my opinion and on the research I have done and tried to show him the research I had done, that thyroid patients would be better at upper end of range or elevated but he said I would not get treated until it dropped to say 194. My mum has pernicious anaemia, so do most of my family and I am trying to prevent it. Am also vegetarian. Anyway, I then mention, the B12 Active test and have sent off for the kit to have bloods done for this, as this test is more reliable and said that I will need a gp letter for this test. Gp responded by saying that if the test was so reliable, it would be on the NHS. Tried telling him that it in the process of being rolled out all over the UK - it may then become available on the NHS, however, at mo its not, though its not that expensive either. Gp is not helpful, I should have told him that many of the best cancer treatments are not available on the NHS and should be, but held my tongue.
Sorry for bombarding with lots of info, but this is where I am at present. I did take advice from a private doctor who said there was room to increase thyroxine to bring my T4 levels up - which I agree with. Am only working part-time after being out of work for 6 months due to redundancy so going private for meds is going to be a real struggle, so am trying to find a way around this is poss. Maybe reducing T3, would allow me to stay on 100mcg and get my T4 levels up. x
Looks like when you get up to 100 mcg T4 and 20 mcg T3 you make a lot of reverse T3. There's a big drop in the fT4 as the fT3 rises. So your rT3 is canceling out the effect of the added T3 dosing. Your body just will not tolerate a higher increase in metabolism for reasons.
You could go with 75 mcg T4 and 5 mcg T3. This way you wouldn't be producing the rT3 and blocking excess T3 meds.
Also given the gynecological surgeries, chances are your progesterone/estrogen levels are not normal either. You may consider investigating the possibility of using some form of hormone replacement therapy. You don't have to use pills. Bio-identical hormone creams work well. See a gynecologist about this. Some of your not feeling well can also be the result of sex hormone dysregulation. Progesterone helps to improve sleep, energy and is neuroprotective.
But if your vitamins and minerals and protein intake are inadequate, then, yes, nothing will get you feeling well. Have you analyzed your diet and calculated how much protein you are consuming? Protein your body can actually utilize? Hair is made of protein and if we are not getting optimal amounts, the body prioritizes and hair does not grow normally. Hair is one of the first things to indicate malnutrition.
Certain forms of dietary protein are not fully usable by our body. I don't know what your definition of 'vegetarian' is. If you include dairy and eggs, then you may be able to boost your protein intake to desirable levels. If you are strictly vegetarian, then you really need to read up on what it is you need to do in order to obtain the amount of protein per day that your body requires to function well.
Certain minerals are also not as available, like zinc for example. You may need to spend some time looking at your diet and taking supplements for whatever may be low intake.
Speaking of diet, just had my diet analysed (private) and it was found to be poor. I am in the process of addressing this. I have added a multi vitamin micronutrient (with minerals) as I was lacking in this. I ordered the Bio ones of internet. Also, added 1000 strength vit c on recommendation. I do eat eggs, though try to keep off dairy as have many allergic symptoms to this. My big weakness was always chocolate as I have a very sweet tooth and fruit. I love lots of veg and am trying to eat more nuts and seeds as well. Also, I do eat gluten free when I can, and don't eat much bread in any case.
I am trying to plan ahead with diet as with my job am out and about and not at one base so its easy to fall into the trap of grabbing choc on the go or a baguette. This is something I really need to take control of at the mo.
Your diet analysis should also include the quality protein component. Eggs contain about 13 grams of fully available protein. You'd need to eat a number of eggs everyday to get 60 grams which is a minimum for health. Someone who has been malnourished for a long time would need to rebuild what is missing.
This is a big problem for energy because low protein = low skeletal muscle mass, poor heart muscle quality and condition.
Pulses, for example contain a certain amount of protein when laboratory analyzed. Unfortunately, the percent of that protein which is actually available and usable by the human body varies between about 27% to under 50%. In order to ingest sufficient amounts of this sort of protein, a person needs to ingest large amounts and this can result in weight gain due to the carbohydrate component.
You could explore grain alternatives like Salba (chia), amaranth, teff, and quinoa.
Increasing T4 or T3 dosage will not improve stamina or feeling of health because there is nothing upon which the hormones can work. The fact that as you increased your T3 on top of the T4 resulted in a lower fT4 is indicative of a lot of rT3 production in order to preserve your life. Your body is wise. You need to work WITH your body. When you increased to 100/20, you were imposing your will and desire onto a body that just is not capable of responding in the way you wish.
RT3 comes from t4, not t3. It is in all the literature. I have had my ft3 levels way over range and very hyper, no rt3 and no ft4. I was on t3 only at the time.
If someone is malnourished, it's probably not a good idea to just take T3. She's on 100 mcg T4. That's plenty to make rT3 to counteract the effect of the T3. See how her fT4 went down from 21 to 15 once she started on the T3? Her results prior to with just 100 mcg T4 were actually fine. But once she tried to force her body to increase metabolism, the body said 'no'.
Green vegetables, mushrooms etc. contain folate. If the folate is bottom of range, then clearly even the vegetable portion of the vegetarian diet is not being followed. This is not unusual though. As Pinkgirl admits, she drinks coca cola for breakfast, eats chocolate and bread.
There is so much more going on here than just thyroid. This is why it is oftentimes very difficult to advise anything without comprehensive lifestyle/diet/environment information. Probably other hormones are off kilter as well.
ft4 should not go down when raising t3, it doesn't work that way. There is some other reason for this. But if she has a high rt3, this is her bodies way of protecting itself, as you say, and it really needs protected! As you say, she is malnourished. She could indeed harm herself on t3 only and i never suggested that she do that. I don't think she should be pushing for more t4 either. I don't see what is wrong with eating a small amount of bread and chocolate or an occasional Cola, as long as the person eats well the majority of the time and is properly nourished, which she is not, i see. Bread is all that i could eat when my stomach stopped digesting it's food, it was very soothing and digestible.. I have been tested for gluten issues, 4 different tests, including sensitivities and a biopsy of my intestine...all negative.
I did not even think you were suggesting she go T3 only.
Coca cola for breakfast? Phew.
I guess this is the modern way. We never had any of this sort of thing growing up. Once in a while, if we were travelling, then my father would let us have a bottle of something from the big cooler at gas stations. These sorts of things were 'treats' as was 'french fries'....... only at drive in movies. To keep us quiet so my parents could watch in peace. For a kid, this was 'forbidden fruit', a delicious 'treat'. Believe it or not a huge treat was white bread toast with margarine from some greasy spoon place on the highway packaged in a foil lined bag. We never had this spongy white bread at home or, heaven help us all, margarine. It had to be cultured unsalted butter or nothing on real bread.
Back in those days there were no convenience foods (at least not in my home). My grandmother made everything, including egg noodles. I guess it's probably because I grew up watching and helping her that it's normal for me to cook fresh food. Except for forays into stupid stuff while my kids were young, for many years now, it's strictly real food. My children learned how to cook from me and thankfully, they are now doing this for themselves. I think so many people grow up in homes where cooking is not valued. From what I see in shopping carts at supermarkets, it's pretty dire. (Ethnic supermarkets not so much. Immigrants, as usual, can't afford the processed, convenience stuff.)
My younger daughter has coeliac. It really bothers me that she suffered for years without any awareness on my or the doctor's part that this is what was wrong. It played havoc with her hormones. Once we went gluten free around here, everyone's health improved, even mine.
You are rare indeed and i think it was a good thing..really, soda's and white bread are pretty much junk, unless some vitamins are added to the bread. You should be very healthy being fed so well. I assume your immune system has gone nuts? So not fair. It's great that you taught your kids to cook early on...well done!
It's secondary hypo. Other hormones have been out of whack most of my life as well. (I think this might be trauma related.) Still are, according to latest tests. I had disgusting horrible tests done back in 1986 which showed this. Except back in those days patients did not have rights to copies of their test results. So now I'm having a semi-uphill battle with current endo because since secondary hypo is rare, she kind of rolls her eyes and assumes I think I'm some sort of snowflake. But this time around she tested prolactin and FSH: neither result is correct for postmenopause. My prolactin was more than double top of range when I was younger and it went down with thyroxine. But now it's the same as it was then. So top of normal range. I could never take the birth control pill because I'd bleed out.
I'm trying to get the 1986 medical records from the hospital. Maybe because it's a teaching hospital and the doctor retired not that long ago, they'll still have them.
Regardless, I think the current endo may see things slightly differently now. But it doesn't matter. I'm self medicating and based on how I feel and the blood test results, I'm on the right track. Will need to tweak a little bit soon.
So yes, my diet is very good. No deficiencies based on tests although the magnesium glycinate I'm now taking does not cause diarrhea. I guess I need it.
I'm sorry about all of this. What tests did you have that were so horrible? My Pituitary is squished..it's called Empty Sella. They have not been able to find any missing hormones, but i don't feel well. My thyroid issue is Hashimotos. What are you taking? Is your cortisol ok? I know we have not had proper testing for growth hormone. Adults need it too. There is some kind of test done that i think requires lowering blood sugar and then testing growth hormone levels..like a stim test. I always thought anyone could get their medical records upon request, but i am in the US.
Back in 1986 there was no law yet. So I'm trying to find out if the hospital still has the records. Since it's a major teaching hospital, I'm optimistic.
I've had an MRI of head and neck done in 2000. Nothing to report as to the pituitary. Cone beam CT scan in 2009, nothing to report. Lateral cephalometric radiograph also.... nothing. (For orthodontics). Neurospect scan indicated a blood flow issue but not in the pituitary area. That was really shocking to me. I went to get that test done, drove to Montreal for it. Just assumed, who me? Have a brain problem? Impossible. Then I promptly ignored the whole damn thing. Who can keep information like that at the front of consciousness? But I was reading the records recently and it's kind of perturbing. Whatever, clearly neuroplasticity has done its job. In retrospect, I'm glad I've been on progesterone since January 1999. That's neuroprotective. But you see? Crappy hormones all round.
Back in 2000 ACTH was normal. 24 hour urinary cortisol was normal. But morning cortisol was low. I guess it must have bounced up at other times of the day in order for total to be normal. These days blood cortisol is same crappy as it was then. It seems to respond to variations in fT4 level. But only slightly. Will find out in December if the new fT3 level (above 5.0) has any effect.
I wonder if possibly it has since the eczema in my armpits cleared up after forever.
I will have to look up the triple bolus test, have not heard of it.
I had a SPECT Scan it showed low brain blood flow in some areas. Maybe it's like the test you had? I have read that hypothyroidism causes this also, not just pituitary. But the doctor told me it would effect my mental functioning and that i would have a lot of body pain as a result. Of, coourse this can be cleared up with proper thyroid hormone..which i can't seem to do. Do you get woozy, breathless or have vision issues? progesterone has done nothing..bi est cream either..seems to be related to my thyroid dose. Thyroid meds will bring up cortisol unless it's an ACTH issue or Addisons. I think i need to go to the pituitary specialist in another state at some point.
The neurospect, they took out blood, added a radioactive tracer to it and injected it into my other arm. Hurt like he**. I don't cry easy but that did it for me.
Supposedly the reason I was not able to get to sleep and stay asleep had to do with the blood flow. The doctor laughed and said "you know that movie 'Awakenings'? You have only one side affected. If you had both, you'd be like those people in the movie. Instead of not being able to get to sleep you'd just never wake up." Thanks a lot.
I have pain. It's myofascial at this point but there was a huge neuropathic component for years. Very interesting how it evolved and slowly went away. But when it started up on my other side, I took low dose Naltrexone. That worked quite well. Now trialing magnesium glycinate and today I bought this magnesium oil spray as well.
I don't have any of the other things you mention. Except 'not stellar' cortisol. Which I'm interested in seeing how the higher fT3 will affect it. I have more energy and energy reserve these days.
The triple bolus test is a beeyach. My blood sugar went down so far, I needed a dextrose IV push. Could not have swallowed anything. No way I'd ever volunteer for that again. But if you need it, then get it done. AT least it will show where problems are.
I'm almost 57 years old and have been on some form of HRT since January 1999. Thank goodness. When I stopped for two years it was not good at all. You only notice the difference when you stop. YOu think it's not doing anything. The good thing, the effect starts kicking in after a couple of days. I stopped feeling like a neutered person and began feeling like I'm female. Strange to say, but true.
You are female? You are so lucky!!! I feel like a ..nothing..right now, no sex drive..i feel like an" it"...it all stopped when my doc lowered my dose of thyroid meds, then i went hyper when trying desiccated. The DHEA is not working now, it stops when my thyroid meds are especially bad. The triple bolus, is it to test growth hormone then?
My cortisol on saliva, is ok when i get get up..in the afternoon! and low the rest of the day..1 point under range. I was told to take licorice root.
Are you on the LDN now? I have it and was so ill and got this black depression while on it, which may or may not be from it, was told to stop until i get my thyroid meds right and feel better..very discouraging. Did you get the ldn from a doctor or from online?
Have you checked out Dr.Lowes protocol for t3 only? He cured all his fibromyalgia patients with his protocol. Myofascial pain ..he used trigger point therapy and t3 only. T4 is only a storage hormone and needs to be converted, as you know, but the direct t3 really helped his patients.
I have a friend who has this myofascial pain ..it's like all around her ribs and chest, it is tight, painful and lumpy, like knots. is this where your si? She had an mri and it showed nothing abnormal!! Will mri's not show it? She swears she cannot barely take any t3..but i know it would help her.
Triple bolus was for TSH, ACTH, growth hormone and prolactin. Maybe something else too.
I took LDN for 8 months last year. Prescription from doctor. But I had to dictate it because most doctors are not aware of its use in this way. A lot of people report sleep disruption from this, but I take zopiclone so didn't notice anything.
I thought the T3 might help the pain but it's done nothing which is why I'm using the magnesium. I thought, okay, I"ll have more energy, I'll go swimming, I'll be more active and do sun salutations in the morning. Well, yes, if I do more activity and take the magnesium it helps. But the T3 was not a magic pill. It facilitates the process. It is not the process. Plus I eat well. I make sure there's no deficiencies. I don't eat sugar or sweet baked stuff or you name it: no junk food. My definition of junkfood is pretty strict though. It includes chocolate.
I contacted a doctor in Ottawa who used magnesium glycinate for a 10 year old with mysofascial pain. I posted about it this past week. She says it takes physical, pharmacological and psychological therapy to treat. I emailed her later and asked how the little boy is doing now. She says he's not in pain anymore. But you know, little boys, if they have no more pain, get very active doing all sorts of things. We, being old farts, having to go to work all day, are different. It takes some self discipline to get moving. I used to be a very physically active person but for the past 5 years or so, it's been terrible. I think (will need to check) the GP lowered my already borderline T4 dose. I was too busy at the time to realize and then was too fatigued, in pain, depressed and apathetic to realize what happened.
I noticed that yesterday (day off work), I was a lazy bum and didn't get moving early in the morning. Muscle spasms......... This morning I got up and got moving and I'm doing well. Went walking, shopping, swimming.... So I guess starting the day with a warm up for the muscles might be in order.
Its good that you were properly evaluated for pituitary damage and i don't think i have been.
Did you do t3 only? The t4 interferes with it working. The ones that failed on high doses of desiccated and t4, that became overstimulated, but still had pain, he moved on to t3 only and that did the trick.
I miss my old self. now, no energy or enthusiasm for most of the past 4 years. Am starting t3 again and will give it time to work.
Magnesium: she put the kid on what amounted to over 600 mg elemental magnesium, so 2600 mg of mag. glycinate: 1300 mg twice per day.
I take the magnesium about lunch time and the next dose about 5 p.m. Does not cause diarrhea. Not like magnesium citrate or oxide. Early days yet. Don't know if this is going to work or how well it will work.
If the T3 portion goes high as the T4 dose goes down, I get ringing in my ears. So going all T3 would be a disaster. I don't like that the half life is so short. Plus there's no modulation. I absorb this very well so a little goes a long way.
Knots can be felt. They won't show on imaging studies.
I'm just thankful that the effects of t3 lasts 1 to 3 days. To feel benefits they say you would need to be totally off t4 for many weeks. You are so lucky that you convert well!
I think the doctors dismissed my friend's pain as mental, when the mri showed normal. They have sent her too a psychiatrist and that doc said she was too ill to treat her.
Not according to the data available. 24 to 48 hours. I convert but not well. Used to convert properly. Menopause will screw things up regardless of everything else.
The drug website and my pharmacist says 2.5 days. There is no reason to doubt them. It has effects in the body that last days, the blood could show a negative amount and it will still be working. Dr. Lowe had so much success with it in helping pain..i just can't ignore his years of research, when i have failed to get well after trying everything know to man, since 2011..i really am at the end of my rope. All my drugs contained t4 and since i don't convert well, this makes sense. My rt3 is not good for the past 13 months. I can't even take enough t4 to be in range, without driving my rt3 up. I was told a reading should be in the bottom 1/4 to 1/3 without hypo symptoms. I'm swollen all over..i have myxedema and edema, with pain.
My friend has been through a lot, it is so very wrong.
Yes...i reintroduced the t4 at 62.5mgs and i started swelling and gaining weight and my pain got worse etc... so i have had to stop the t4 again. I should have lowered my dose of t3 instead of panicking..i had gone hyper and was not thinking straight. My doc's/the hospital, were trying to convince me that i NEEDED t4 etc.. But, i never have been able to raise the t3 high enough to get well why on t4...i would just get overmedication signs but stay swollen. When off t4, i will be able to do about 36-50 of t3. Also, my rt3, blocks my t3 from working. So very complicated and i will have to self medicate.
That's the problem with the T3: the pill strengths are too high. They should make them at 10 mcg and it would make dosing easier. Here we have 5 mcg and 25 mcg. But the price is too high if relying on multiple 5s per day. So I cut the 25s into quarters. I probably could do quite fine with 10 mcg per day along with the T4 but the cost is too exorbitant.
Right now I'm staying put where I am because things are going well. Just at 12.5 mcg T3 my ears are still ringing. If I skip a dose, eventually they stop but then as the next dose enters the blood stream they start again. I've experimented with this so definitely know it's the T3 doing it. Keeping well hydrated seems to reduce the tinnitus as well so there may be an increase metabolism, increase requirement for water factoring in also.
I'm going to change the dose to 112 mcg T4 and 6.25 mcg T3 in 55 days. That means I will have been on current dose for 100 days. Long enough to find out if the tinnitus will stop or not. I don't think it will. When I was on 88 T4 and 15 T3 that started the tinnitus. 10 mcg does not. Also I'll be getting blood taken in December, so the change in dose will be fully expressed in the blood tests coming up. I can more or less predict what the results are going to be. It seems my fT4 rises 2 points per 12 microgram dose increase. The fT3 is quite reliable as well. I've made sure I've had blood taken at 5, 9.5 and 12 hours after taking a T3 dose, so I know what the curve is like. Complicated but a bit more fine tuning and then I think I'm done and can hopefully move on from this thyroid issue for a while. Like forever.... wishful thinking....
I get my t3 from mexico really cheap..like $15 for 100, 25's. The doctor prescribes me generic t3, 5mgs, $4.00 for as many as she decides to prescribe me. I just use the Mexican.
It is not the t3 per say, it looks like it's the t3 added to the t4, that may be the issue. Your t4 dose might have to be lower in order to get the benefits from t3, which is loss of swelling and pain etc..When i have issues from the t3, i cut my t4 dose, not the t3. I have not gotten where i need to be..i guess it takes quite a bit of time, all trial and error. But if you are doing well, i wouldn't change anything. I used to know what to expect from labs until i went to an alternative doctor and told him my symptom, he verified my rt3 issues and said i would not feel well until i lowered my t4 dose and/or possibly stopped it. It is blocking the t3 from working well, but causing side effects from t4 pooling. He is the 3rd doc to direct me to mostly/all t3. My cholesterol stays horrible and i am borderline type 2 with mostly t4..we will see what happens.
I was not able to eat anything the day i went to the hospital and my blood sugar was really high. I became insulin resistant when i developed Hashimoto's..happened at the same time. I have no appetite and can eat very little due to slow digestion. What i eat has no effect on this..it is most likely from low t3 levels. I eat well, when i can eat.
Inflammation and infection will cause blood sugar to sky rocket. It's the body's way of providing emergency energy to deal.
The problem with both type 2 diabetes and hypo is the GI tract does not function properly. The capacity to digest fats goes down. The ability of the pancreas to produce enzymes is compromised as well. This is why there's that saying about diabetics having a sweet tooth. Sugar is something they can digest easily. Other things, not so well. It makes dealing with the situation extremely difficult. And why it's important to stop the process while it is still 'borderline'.
I am inflamed with the Hashimotos also, inflamed gut, from hypo, and fluid. Also, i go hyperthyroid, from thyroid hormone dumping into my blood stream, which raises my glucose. They found the high sugar the year i was hyper for 8 months, before i was diagnosed with hashi's..no one checked my thyroid, but they were quick to use psych. meds and send me to a shrink for "anxiety"..the Bastards! Sometimes, i have type 2 sometimes, the blood is normal, all depends on my thyroid dose at the time. I am in a real mess. I have read many papers relating the high rt3 and low cellular ft3 levels to insulin resistance and they are fixing the issue with t3. I cannot find the articles, but t3 is the alternative way to correct it. Also, the inflammation..hypo = inflammation for sure.
rT3 is the body's way of putting the brakes on. Even healthy people produce fluctuating amounts of rT3 over any 24 hour period depending on many things. So I don't view rT3 as being a negative at all. If someone is producing a lot of rT3 then the reason for this needs to be investigated. Is it merely because the thyroid hormone replacement is too high? Or is there something else going on which the body is reducing metabolism for a reason?
There are two ways that the body regulates thyroid influenced metabolism: one is the TSH. But once the hormones are already released into the bloodstream from the thyroid, rT3 is what regulates 'on site' metabolism. This happens in healthy, normal people. Once someone is actually having to take T4, then it's all there from an external source. There is no regulatory nuance. The only way the body then has a means by which to put the brakes on is by producing rT3 in response to the T3 produced from the T4 medication.
Forcing the issue by dumping T3 into the circulation won't fix whatever else is the problem. If a person has insulin resistance due to type 2 diabetes, ramping up a forced metabolism through mono-therapy leaves the body in a situation where it is unable to regulate anything at all. It is not just going to make the cells of the body instantly more sensitive to insulin. You confirm that when you write "They found the high sugar the year i was hyper for 8 months,"
The body is complicated. T3 is not like simply applying a lit match to the wick of a candle and creating a flame. Way more things go on and are changed by applying T3.
This article is a good explanation. I have so many reasons for high rt3..high cholesterol, hypothyroidism, autoimmune disease, inflammation, stress, anxiety..it is not self protective, not always, it can be a RESULT of any of these conditions. Getting out of the hypo state and possibly ldn could help..it seems to help rt3. I will not be able to find the exact reason for 2 years of rt3 being high enough in range, to block t3 from my cells. Flooding t3 into the cells does help so many people with this vicious circle. Dr. Lowe did well on t3 only..good enough for him..it's worth a try,nothing else has worked.
Is your ferritin so high from taking iron? Or is it just high? If it's from taking iron, you seriously need to back off.
I still think that 75/10 would be a good place for you to sit for a few months. You wouldn't be sledgehammering T3 and the amount of T4 would still give your body a chance to modulate the T3 you are taking. Then while you are coasting along at this dose, you need to get nutritional counselling to help you out with the blood glucose issues. Take LDN if you need it. You can order the 50 mg Naltrexone pills on line (they are dirt cheap) and follow the directions from YouTube videos on how to dissolve them and how to titrate the dose. When the pill is dissolved, only the drug is in solution. The excipients stay in the bottom of the container. Unlikely the NHS will cover the cost of a compounding pharmacy making up varying doses up to 4.5 mg in capsules. Take something to help you sleep. Lack of sleep results in blood glucose dysregulation as well. There must be a short acting hypnotic/sedative available in England.
Unfortunately bupropion (Wellbutrin) is also unavailable in England although it is an excellent 'upper' for depression and boosts energy. The other anti-depressants do not boost energy. I don't get why the NHS and whoever is in charge of what drugs are available has deemed this drug to be a 'no go'.
I cannot take 75 t4 it makes my rt3 too high, so does 50..i was told it was all too much for me, i have been there before, for many months and continued to swell and gain weight.. i get worse on those doses. The most i could take is 35 t4..maybe.
I am in the US.
I cannot tolerate anti depressants, not Wellbutrin. I don't know what Zopiclone is but, i would not need a "boost" or these meds if my thyroid dose was correct. I will never put all that dangerous crap in my body again
I don't drink coke for breakfast now, not had coke in about 1 year. I was craving it for a long time though and then had the parathyroid test which showed very low vit D. Since being on the Calcoes the coke cravings eased and I no longer drink it at all.
I was also very tired and exhausted despite being well medicated but my blood test results showed extremely good level of thyroid hormone in the blood system -of course this does not necessarily mean it is getting into your actual cells -no test developed for checking this. I actually have very low levels of vit D and i was amazed once treated ( Look at The Vitamin D Council website) my fatigue, aches and pains went away. I also slept well and did not wake up feeling tired every morning. Your GP can check this with a simple blood test.
Unfortunately I doubt there is any Gp in the UK who will go against the advice of a NHS Endocrinologist and alter the dose of your thyroid meds -once under specialist care they totally rely on them for advice and tend to do their bidding I have found. I am under a private specialist and my GP would not medicate me with a NDT unless I was. When my specialist died my GP was most insistent that I went to another and would not continue treatment if I refused ( despite being on NDT for 6 years at the same dose....lol).
Hi, same as you, my vit D was very low. Am on calceos 2 x daily. I found out this as I was craving coke every morning and drinking it before I had even left bed. I took thyroxine with water and was then reaching for chocolate and coke just to give me the energy so that I could get ready for work. I then thought, 'this cannot be normal' so looked up coke cravings on internet and it pointed to calcium. Also, plagued by fatigue and still struggling with it. So on next appointment with GP (had a really good practice at that time). Gp did parathyroid tests and found vit D was v low, calcium was ok but need it for vit D, and also referred me for a Short Synacten Test - result 527 (told this was peak).
I know what you mean about endos. Mine is trying to reduce thyroxine:-(. Going back to 75 will give me more symptoms, as experienced before. Am trying to find another endo who will work in same way as some of the best thyroid doctors. Mine specialises in Diabetes, not thyroid. I am also glucose intolerant, but, again its not recognised on the NHS and hypoglacemia can lead to diabetes. I have a high family incidence of this. Am all for preventative medicine, which my endo and gp don't recognise grr. x
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For a kid, this was 'forbidden fruit', a delicious 'treat'. Believe it or not a huge treat was white bread toast with margarine from some greasy spoon place on the highway packaged in a foil lined bag. We never had this spongy white bread at home or, heaven help us all, margarine. It had to be cultured unsalted butter or nothing on real bread. 
Has anyone used a private GP to get prescription after NHS GP has refused?
Poor Conversion continued
Latest results - suppressed TSH means Doctor wants to lower my thyroxine dosage!
Test results on thyroxine only - any comments?
T4 & T3 GP still saying normal no action
