If anyone can help or give advice, I will be very grateful.
I have been self medicating with 50mcgs of tiromel split into two doses with 25mcgs of levothyroxine. I was feeling okay until a couple of weeks ago, not great but not terrible. Occasional tinnitus, fatigue, Sleeping better but still no energy. Started the sirt diet at the beginning of January and along with dry January, managed to lose half a stone.
Had bloods done Friday and gp rang me Saturday.
T4 5.1 (11.0-23.0)
Tsh 0.1. (0.3-5.5)
free tridothyroninine 5.0 (4.1-7.9)
B12 851. (190-800)
Folate 10.1. (3.9-14.0)
Vit d 94. (51-250) adequate
Gp wants me to add another 50mcgs of levothyroxine which I have done.
My bp is high but I am not on any medication for it yet and now my heart feels like it is bounding out of my chest.
I work for the nhs and my jib is at risk and I have a lot of family stress at the moment.
Could this be the cause of my skewed results or is it just down to being improperly medicated?
I did wonder if all the spinach and kale in the sirt diet may have had a goitregenic effect? Do I need my pituitary gland investigating?
I Google night and day trying to find answers and the path to wellness without much success. It's having a negative impact on my relationship. I am only 51 but at the moment I feel desperate to get my life back. Hence, up at stupid o'clock.
Thanks in advance.
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rubyroo25
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I can't help I'm sorry but I can say this is me exactly , only difference is doc says I am fine , whereas I am desperate . I have just tried t3 from Thailand but had to stop after 3 weeks because felt worse . At least the forum helps me to know it's not just me , it's not in my head , you are not alone
I would get pituitary explored and ferritin. Take selenium as the t4 may be converting to t3 and held in t3 and rt3. Try zinc and magnesium , vit c (soluble) and a good omega mix or krill oil.
I say this as they will all be beneficial - . Also remove gluten and any highly inflammatory goods or drinks. This is ESP good if an auto immune problem - not indicated here. TPO antibodies.
I've so far self healed without drugs and it's going ok. Have good n not so good days and notice some symptoms still but very workable. And life ok mainly.
Do hope some of this helps. Tsh is low for low t4 so if you can rule out that it would be good.
Sara, T4 is supposed to convert to T3. That's what it's there for. But it's going to be low as she's taking T3 because the body won't hang on to it if it doesn't need it. And the TSH will be low because she's taking T3. Her results look perfectly normal for someone taking T3.
Yes, it's not far off the bottom of the range. With the ranges you gave us, mid-range is 6. Most people need their FT3 to be up near the top of the range to feel well.
Hi Greygoose, I didn't see a T3 result so we don't know what the Ft3 is regardless of taking T3 or not (now)... also didn't see a TPO result so don't know if its an Auto immune problem or not. Clearly T4 is low and TSH is low which is not normally hand in hand, hence suggesting a pituitary problem. I understand T4 is supposed to convert to T3 but I didn't see a measurement of T3 so we don't know what the conversion ratio is... yet, still selennium can help if help is needed in that area, if it is not, it wont do any harm. Safer than bouncing round T4 doses until the root issues are resolved.
It doesn't seem to pose much of a threat. Like anything common sense prevails and perhaps the advice of a nutritionist if concerned. Some data:-
Recommended Intakes
Intake recommendations for selenium and other nutrients are provided in the Dietary Reference Intakes (DRIs) developed by the Food and Nutrition Board (FNB) at the Institute of Medicine of the National Academies (formerly National Academy of Sciences) [6]. DRI is the general term for a set of reference values used for planning and assessing nutrient intakes of healthy people. These values, which vary by age and sex, include:
Recommended Dietary Allowance (RDA): average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals.
Adequate Intake (AI): established when evidence is insufficient to develop an RDA and is set at a level assumed to ensure nutritional adequacy.
Estimated Average Requirement (EAR): average daily level of intake estimated to meet the requirements of 50% of healthy individuals. It is usually used to assess the adequacy of nutrient intakes in population groups but not individuals.
Tolerable Upper Intake Level (UL): maximum daily intake unlikely to cause adverse health effects.
Table 1 lists the current RDAs for selenium in mcg. For infants from birth to 12 months, the FNB established an AI for selenium that is equivalent to the mean intake of selenium in healthy, breastfed infants.
Table 1: Recommended Dietary Allowances (RDAs) for Selenium [6]
The point is, you said taking selenium was 'safer than bouncing around T4 doses'. My point was, just about everything has its drawbacks. Changing T4 doses isn't exactly unsafe.
And, know that her T3 is low (free tridothyroninine 5.0 (4.1-7.9), what she actually needs is more T3.
Yes it sounds as if it would be good to check out the pituitary, particularly if you've ever had an experience that might damage it, like a head injury (even a concussion) or autoimmune disease. As Sara747 says, low TSH and low T4 don't usually go hand in hand. See this link from PatientUK under 'Investigations' patient.info/doctor/hypothy... which says that secondary hypothyroidism (i.e. caused by pituitary) will give lowered TSH, lowered T4 and 'lowered or normal' free T3. The Pituitary Foundation gives a list of the tests for pituitary function. I would just say, beware of the short synacthen test that often gives a 'normal' result when in fact patients have secondary hypoadrenalism.
I hope you feel better soon. Keep fighting and googling!
Rubyroo,
Your TSH & T4 will be low if you are medicating largely T3.
Your results are mainly fine but T3 result is a little low as you are medicating 50mcg.
If you feel unwell it could be that symptoms have yet to catch up with good biochemistry or the kale and spinach is stimulating the thyroid and raising antibodies are attacking the gland.
Raised antibodies will cause massive inflamnation in the body and indirectly interfere with good thyroid gland function. Are you still gluten free ?
I have found supplementing theraputic doses of Curcumin to be beneficial in reducing inflammation which would not only help with lowering antibodies but helping with your aches and pains.
My GP also started me on 100mcg Levo with a TSH of 47.3 and the shock ruined my already failing adrenals. Five years on I am still rebuilding but they feel any little set back.
Have you done a saliva stress test to assess cortisol levels.? ( link below)
This would enable you to supplement glandulars and adaptogens known to rebuild cortisol levels.
Low cortisol will interfere with thyroid function by decreasing TSH, lowering thyroid production, inhibiting T4-T3 conversion & increasing T4-RT3 conversion. It will also indirectly effect blood sugar levels and gastric juices encouraging gut dybolosis.
I don't think the sirt diet is particularly adrenal friendly. Adding fish oils and Vit C, leading a healthy life style & eating regular healthy meals including proteins, fats & carbs will help struggling adrenal glands.
You are already medicating the equivalent of roughly 180 mcg Levo. If you feel a raise would be beneficial I wouldn't raise more than 25mcg Levo on alternate days as the T3 should help the extra T4 to convert giving you more anyway. Remember any unused hormone may be converted into reverse T3 which will block T3 receptors and stop its availability for use. Are you still supplementing selenium known to aid T4-T3 conversion and also reduce antibody levels. ?
Four saliva tests that measure the available "active" cortisol (& DHEA) secreted at set times over a 24 hours period. The results will allow you to see any imbalances in the daily circadian pattern so enabling use of correcting supplements to aid your adrenal health. Unfortunately this test is not generally used or recognised by GP's.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Kale and spinach do not stimulate the thyroid gland. Goitrogens have the opposite effect. And if the gland were being stimulated to put out more hormone, her results would be higher. I Don't think goitrogens have any effect on antibodies, either.
However, an excess of goitrogens could be having a negative effect and making you feel more hypo, rubyroo. If you suspect that, can you not cut them out for a few weeks and see if you feel any better?
The sirt diet seems to be very hot on goitrogens - strawberries and green tea, etc. And it recommends soy, which is an absolute no-no for hypos.
But no type of diet will work for long without the correct hormone replacement. Your FT3 is below mid-range, whereas most people need it up the top of the range to feel well.
If you're a bad converter, there's absolutely no point in adding more T4. It won't help. It doesn't matter that the FT4 is low because you're getting the T3 you need from the Tiromel.
Have you had your nutrients checked? vit D, vit B12, folate, ferritin? They all need to be optimal for your body to be able to use the hormone you're giving it.
Thanks grey goose. I only had vit d and b12 checked this time. Last time I was at Gp I asked for everything to be checked this time and she said she would put it on the system. When I arrived Friday the only request was tsh so I badgered the nurse into t4 t3 vit d and b12. My mind went blank after that!
Best to take a B complex with vit B12, to keep the Bs balanced.
You could also try taking some zinc with the vit D3 and magnesium, because they work together.
Oh, and you should really be taking vit K2 with the D3, because D3 raises calcium levels, and you want the calcium to go into the bones, and not the tissues. Vit K2 makes sure that it does.
The fermentation gets rid of all the nasties. If it says soy protein, or soy flour, or soy oïl, soy milk, tofu, it's unfermented. Soy sauce is supposed to be fermented but rarely is these days.
Even soy, fermented soy is only supposed to be a condiment, not a main meal, the way people in the west use it. It should be taken in tiny quantities.
GMO, so true! I just bought some Brussel sprouts from the supermarket - in an attempt to increase my ferritin via Iron. Those puppies were as big as my fist! If they are not GMO'd then I don't know what is.
Brussel sprouts won't raise your iron much anyway - or you'd have to eat an awful lot of them! And you'd still have to eat something like potatoes to help with absorption.
But isn't it better to get the thyroid working again ? Ideally? agree with the check on cortisol levels. Most GP's don't check adrenal function and it is heavily linked and forcing low adrenals into stress with too much medication and has possible adverse reaction.
Inflammation can be checked with antibody check. Not submitted data here so hard to establish which foods if any to omit but agree eating greens is good for adrenals but best broken down a bit through heat to cancel any goitre effects. unlikely a problem if no goitre present.
What makes you think that the thyroid is capable of working again? As you said, we Don't know why it isn't working, but in my experience, it's very rare for a thyroid to start working correctly again once it starts to have problems. If there are antibodies, then you can't repair the damage they have done.
Do not believe what they say about cooking cancelling goitrogenic effects. The point about goitrogens is that not all hypos are sensitive to all goitrogens, but there could be one or two - or more - that do affect you. And those one or two will still have an undesirable effect whether cooked or raw.
However, just being sensitive to a goitrogen doesn't automatically give you a goitre. You would have to eat a lot of it over a long period to get a goitre from a goitrogen.
It's very simple. People from all walks of life have managed to heal their thyroid issues. AI related or not. I have met a few and therefore know it is possible. Most just don't explore this possibility fully.
Re food sensitivities it's probably fair to say not one size fits all and therefore much of this is conjecture where diet is concerned with some key dos and donts. I'm not sure which vegetables don't break down the goitrogenic element by strong cooking but do enlighten me. / us. Thanks.
My point was the same that large quantities need to be eaten to cause a goitre.
...Ah had typed it earlier, but was on iphone and must have missed that bit out (or was on another post that didn't go through about large quantities). The Goitrogenic component interferes with iodine production needed to make T4. Some fruits and vegs have a mild component of goitrogen whilst others more... so hypo sufferers are able to eat the more mild ones in small quantities without too much of a problem - though taking the natural route perhaps all should be avoided for a period of time.
By the way, a large indicator of antibodies does not always signify a lot of destruction, it depends again on other factors whether the antibodies are T1 or T2 cells of the immune system. One being marker the latter being seek and destroy antibodies... causing more damage. Annoyingly for AI sufferers, the endo doesn't relay a next level screening to immunology to establish this relevant details as these need to be in balance - and certain foods and drinks even herbs can inflame one or the other further out of balance.... another list of dietary considerations....!!!! I feel for anyone on this AI Hypo path as its very confusing... and generally so little understood widely let alone by GPs.
Personally I have found Marc Ryan to be a helpful guide who has also written a good book about Hashimotos in remission... a pretty comprehensive guide.
Ooh Greygiise can you give me more info re the goitrogens and cooking please? I've always understood that if they are cooked we are fine to eat them -have been eating them like that for years. Currently eating a fair bit of broccoli -not noticed a problem but am always careful to make sure it isn't crunchy like the current trend is.
Would be interested to hear more about why you believe cooking doesn't work
If you haven't noticed a problem then there isn't one.
As I said, not all hypos are affected by all goitrogens. Just some people have a problem with some of them IF they still rely on their gland for some of their hormone.
However, if you are particularly sensitive to a particular goitrogen, then cooking won't help.
In my case, it was pears, strawberries, corn and walnuts (and soy). I was once given a slice of cake, not know ing there were walnuts in it - a cake that had been baked - and it made me just as ill as a raw walnut would have done. I never actually tried cooked strawberries. Or pears. But, corn, you wouldn't eat raw, would you. But, even out of a can it made me bad.
Now my thyroid is dead, for all intents and purposes, I have no problem with any of those things (except soy).
Thanks greygoose. I dont have a problem with the goitrogens but I do cook them first and avoid things like coleslaw. Wasn't aware that walnut, strawberries and pears were goitrogen but I gather now they are very low in them -I eat them all regularly...without a hitch.
my thyroid long time ago upped and left me -but I still thought we had to be careful to cook goitrogen green veg like sprouts, cabbage, broccoli. kale.....
Goitrogens work by impeding the up-take of iodine by the thyroid gland. If you haven't got a working gland then there's not much they can do to you, is there.
An awful lot of rubbish is talked about goitrogens, but they're not the monters they're made out to be.
I'll dig out a complete(ish) list for you, just out of interest, but the only one you really need to avoid now, is soy.
Hi When taking T3 in any form it does lower T4 and TSH . My Endo says to go by the FT3 then and yours is OK. However, if feeling ill something is not right. Is it the diet?
I had exactly the same results when I started taking more t3 than t4. It seems to be normal that the t4 falls into its boots when you take large dose of T3. If you want to add more Levo then you will need to reduce the T3 slightly. I would try a 25mcg raise and decrease the T3 by half a tablet see if that helps. If you go for 50mcg I would decrease the t3 down to one 25mcg and then see you feel you could then raise it slowly you may find you feel better with higher dose of t4 than t3. I find that I cannot tolerate more than 75mcg of T4 so top up with t3 I have not lost any weight but have reach a point of equilibrium.
We are all different. and I am not surprised you heart is beating out of your chest, it is a bit of a balancing act getting it right and if you have hashimotos as well then you may be prone to the odd flare which can knock things out of sync.
I think that I will never be 100% again but as long as I am working and able to do normal things then I am ok.
I was wondering as T3 only has a life of 7 or 8 hours maybe try taking another dose of 25mcg before bed ( I've been doing this for a couple of months and feel better, tho I'm no expert)
You could do that but you will have insomnia because T3 keeps you lively. Best to take a second dose just before lunch i.e. ~7 hours after your before breakfast dose. That will give you a boost during the afternoon, you will then be sleepy by bedtime.
I have secondary hypothyroidism, where the pituitary does not produce enough or any tsh. So your tsh will always be low, however much thyroxine you take. This confuses a lot of GP's,as secondary and tertiary hypothyroidism is rare.
I would stop altering the dosage without endocrinology input. You need a pituitary screen, and an MRI scan to rule out picture tumour ( these are always benign apparently).
Hormones have such a powerful affect on our wellbeing,don't tinker with the drugs yourself,get an expert's help.
Good stuff! Let me know how you get on. It's difficult when the levels are not doing what the GP expects. Secondary hypothyroidism is not a difficult concept,but most doctors do not see it. I have had GP's try to decrease my thyroxine dose because my tsh is non existant. So I have had to explain it to them! Eventually I got my consultant to write to the surgery,and it hasn't happened for a while. My endocrinology support has been excellent, and I have every confidence in them. So go ahead! Look up secondary hypo on-line, so you will be well armed. I was lucky,in that it was a very experienced GP who picked up something wasn't right,and knew she wasn't the right person to help me.
The gp is nice and will possibly listen to me. I changed my gp six months ago as when I questioned my then low ( but in range )b12, her response was. ...wait for it. .....'whatever' ha ha.
Ruby roo not read all of the posts so forgive me if I'm repeating something already said but get the lists of the good docs from Louise Warvil -important that you get an endo that is familiar with thyroid problems -many aren't!!
Same here, Sue - they *say* is rare, but I suspect it isn't, but that they don't find it as they mostly test only TSH, and even rock bottom T4 is OK if it is one point into the range. So there are loads of people with depression, CFS etc who are really secondary hypo.
It sounds as if you are overdosed. I would miss any thyroid medication today to let your system settle down.
Does your GP know you are taking Tiromel (T3). That is the reason for your low T4 which is probably why the GP wants you to add another 50mcg of levo as T4 is below range in your blood test.
With 50mcg of T3 and 75mcg of levo you might well find you are overdosed and might get some unpleasant symptoms.
50mcg of T3 is equal, in effect, to around 200mcg of levothyroxine! So with 75mcg of levo your dose is 275 mcg approx of thyroid hormones.
I take less than 50mcg of T3 and I am on T3 only.
For someone on T3/T4 combo your blood tests are good but if your GP is unaware he's puzzled about your low T4.
When on T3 you have to be very careful . You cannot willy-nilly increase doses without advice. The advice is to take your temp/pulse before beginning. To go gradually up taking temp/pulse frequently.
"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Gosh thanks everyone. I have just woken up to all this information.
I will try and respond to all the comments.
Gp is aware that I am taking t3. I informed her that I would try self medicating aschronicugh my last bloods in July were ok, I still had a lot of aches and pains and terrible restless legs.
I started taking the t3 in about October and should have got the bloods done sooner but had a problem making an appointment as I tend to prefer to discuss the results face to face.
The pains reducedreduced almost to nil and the restless legs were rarely.
However I have since develped plantar fasciitis...I think. I am going to the podiatrist tomorrow. I felt ok as I say until the last few weeks. I have ditched the sirt diet for now but never ate the soy as I know that it is a no no.
I was mostly gluten free until Xmas. It all went pear shaped then. I think also my vitamin regime has taken a nose dive as I have run out of a couple of things and haven't got round to reordering. ..selenium being one of them. The stress I am feeling means that I find it hard to keep on top of things.
Shaws....I think you are right about being overmedicated. I have increased the dose from 25 mcgs a few weeks ago I had tinnitus, low temp etc. My temp is now 36.4 and I did lose weight.
As the Gp has told me to increase the levo I have dropped 20 mcgs of tiromel. I know tinkering is not good but i have used my symptoms and temp as a guide.
It is all soooo complicatd and I feel that we are not being served well by the nhs.No ofoffence to anyone with a long term condition but there are specialist nurses and groups in gp land for so many chronic diseases. But this condition which has so many asociated problems, is left to the patient having to advocate for themselves! ....rant over
Ruby, I've read the comments. Your FT3 is too low to be over medicated but to your adrenals, you may be over medicated. They control how much thyroid hormone your body can handle. Also low iron often is the cause of restless legs and it's probably related to your plantar fasciitis. Low iron also reduces conversion of T4 (that's why I would not raise T4) That may be why your restless legs were relieved by taking T3.
If you have a foam roller you can try stretching your arch by rolling it with pressure. Don't take any drugs unless you want to supplement iron. stopthethyroidmadness.com/a...
This shows the importance of iron. One reason you could be deficient is that you need lots of stomach acid to absorb it and that also can be low when you are hypo.
I'm taking Naturethroid which is T1,2,3 and 4 and am feeling better. I'm also doing a 2 hours of yoga and cardiovascular exercises. I've cut out gluten and carbs. I take 1 tsp of cod liver oil, 300 mgs of magnesium and 300 mgs of potassium. Feeling much better than I have in ages.
Is your two hours of yoga etc per week? I need to get back to something but need to sort out plantar fasciitus although I think yoga may be good for it. I used to do lots of exercise gym and running but don't really have theeenergy at the moment.
Where do you source your nature thyroid? It all gets a bit expensive!
I do a little yoga routine in my bedroom about 4- 5 times a week. Lift light weights 2 - 3 times a week then walk on treadmill (3.5) for 1/2 he to 45 minutes. We just bought bikes, but have only used then a couple of times. Can't believe how much energy I have!
By the way, my cod liver oil is a liquid that must be kept refrigerated, it is lemon flavoured and has no taste. I live in US and buy it on line from Vitacost $20 free delivery.
i would have just increased the t3 and not touched the t4 or gotten rid of it all together, because 25 is very little. . and it seems it is making you ill, but not helping the hypo symptoms, but messing with your heart. on mostly t3, your labs will look off and you are not supposed to dose by what thyroid labs show. This will leave you ill! As for pituitary, it would depend on what it looked like before thyroid meds. T3 lowers TSH..its normal.
If you have hashimotos thyroid meds will not be enough to get you well because you have autoimmune disease. The problem is with a bad gut, a bad immune system, not your thyroid.
You need to correct your thyroid hormone balance. 50mcg T3 (Tiromel) is a lot. When I was on T3-only, I took 62mcg daily and I weight around 78kg. You should not let your TSH fall below 0.1; if you take that much more T4 on top of 50mcg T3, you will be hyper. (Actually, the AACE recommendation is to not let TSH fall below 0.3; my TSH=0.5.) I suggest you try dosing in accordance with the Abbott recommendation: the T4-only full replacement dose is about 1.7mcg/kg body weight. So figure your T4-only full replacement dose, then reduce that in accordance with the T3 power factor of 3-4, and adjust your T3:T4 ratio to be somewhere between 1:4 (what is in NDT) and 1:10. For example: I am on T3+T4=15+75 mcg daily. I weigh about 78kg, so my T4-only full replacement dose is 78*1.7=132mcg daily. I dropped the amount of T4 down to 75mcg daily, then filled in with T3. Assuming T3 power factor of 3, 75+3*15=120mcg; or assuming T3 power factor of 4, 75+4*15=135mcg. So my T4-equivalent dose is somewhere between 120 and 135. Note that my T3:T4 ratio is 15:75, or 1:5.
When on T3 medication only using blood test to guide will not work.cLook at Paul Robinsons work and books -birth he and his docs found this after years of medicating with T3. This is because the blood tests were not designed for this type of treatment -they were designed to be used with Levothyroxine.
You will need to go on signs and symptoms, how you feel to be successful with this protocol That is why Shaws talks to you about doing your temperature and pulse. You are taking such a little amount of T4 that you are effectively using the T3 only route.
Below is a link to Pail Robinsons Facebook page. There is a support group as well.
Google miss Lizzie RT3 she has a very good explanation of it, you may have high RT3 or T3 resistance, you may need to clear RT3 with T3 only this can take 12 weeks.
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