I have Hashimoto condition and a hypo level with a TSH over 100 and a very poor T4 level of 3.2 I have bee unable to get my T3 tested as they seem unimportant to the NHS in the uk . I have been really unhappy on Levo but in Britain it seems I have no other choices in this matter, unless anyone knows otherwise!
I have been OFF Levo for about 7 months and though my energy is still crazy I do not suffer from all the side effects - like itchy skin, anxiety ad excessive spasms and my emotional energy is so much better.
My Doctor has recognized that I do have a resistance to Levo but has not given me a solution, and is ok for me to go without as my results were so tipsy turvy until I see him again next week
I do have a thought though I am wondering if it my adrenal is a problem, so I have started following a diet and supplements which helps this. I read that an adrenal problem could be a reason why there is a problem with the uptake of T4 in my body, as I feel so toxic on it.
However my doctor has tested my cortisol level which is 414nmol/l and felt that that was ok. I did not fast when I took this test
This is before I realized the conection with T4 and cortisol.
Any advice would be helpful.
It is benneficial to post ranges used by the lab. T ranges vary from the test equipment used. Find that T4 range they used. It should be what is called Free T 4, not just T4. You need to find a naturo path Dr that will test Free T3. This will most likely mean going out of your national health care system in the UK.
"This is before I realized the connection with T4 and cortisol"
- what connection?
You can have stressed adrenals if your thyroid is also low.
I'm not sure what you are asking here, not very clear.
Anxiety as a severe hypothyroid symptom = unnatural high energy and will actually cover up fatigue. Its nature way of keeping us alive and alert in survival mode.
I read that stressed adrenal may effect the the conversion T4's into T3's as it is coverted by the 5' - deidodiase enzymes and the process does not work as it should when the adrenals are ineffective.
I wanted to know if my cortisol level which was measured in july 2009 as 414nmol/l, (unfortunately no range was given) is a sign of adrenal stress or not - the doctor did write that it did not show signs of hypofunction. I just wanted clarification.
I find it difficult to write about my whole history as I think it would take a few books so I try to be specific, and I just wanted to know if I did improve my adrenals by by recommended diet and lifestyle would this improve the ability of my body to convert T4 to T3. If you want to help me more with any specific questions I would like to answer them?. Do you really feel I am barking up the wrong tree by helping my adrenals it will help the absorption of T4 in body?
Thank you for the advice regarding a Naturo Path, would they also be able to prescribe T3 medication in the UK or another form of T4 rather than Levothyroxine.
It was interesting what you say about an unnatural high energy but I have felt a lot better without Levothyroxine - is this highly unlikely? I do feel my body was more toxified while on Levo as my body had experienced regular spasms and severe joint and skin problems while on them and my concentration has improved without them, but my body is still not right and my tests prove this.
Therefore, I am aware that I do need thryoid treatment but I really need to get the right treatment for me, and I need help to do this. If anyone can recommend a very good Naturapath in the UK I would really appreciate it.
And I really do appreciate any responses - and if it is unclear please feel free to say.
What dosage of levothyroxine were you put on? Normally, it's best to start out at very low doses and work up to the higher doses; however, some doctors prefer to start their patients on a "maintenance dosage", right off the bat. This often causes adverse reactions to the med, such as you had.
Usually, it's the lack of hormones (levo) that causes the joint and skin issues, along with muscle spasms, etc. It's quite usual for patients to report feeling worse for a while after starting/changing a med/dosage, and it really sounds like you were given too high a dose, without having a chance to get used to the med.
Your body had gotten used to not having the hormones and was trying to compensate, then all of a sudden, the hormones were there in quantities your body may not have been able to handle all at once. You didn't become hypo overnight, so you shouldn't try to get well over night.
When the thyroid doesn't produce adequate hormones, the adrenals often try to "compensate" for them, by producing extra adrenaline, which could be giving you the "high" you are feeling.
It may, also, be that you don't have enough FT4 to be converted to FT3, which could be why you aren't getting well. Most of the conversion of FT4 to FT3 is done in the liver.
You might try taking selenium capsules, purchased at your local vitamin shop. Studies have shown that selenium helps in the conversion of FT4 to FT3. In addition, you could try taking magnesium, which has a calming effect.
Have you been tested for thyroid antibodies to confirm/rule out an autoimmune disorder?
We've heard from other members that those on NHS in UK have to go through a special process to get FT3 testing and T3 medication. I can try to locate one of them and have them contact you, if you'd like. In the US a naturopath can prescribe T3 med; I can't say about UK.
Technically speaking Thyroid and adrenals are separate. All body hormones work to gether, even testosterone. Its not uncommon for testosterone levels to mirror thyroid hormone levels. Weak adrenals tent to fluctuate, there are quite a few adrenal tests in the USA. I would suggest checking out the adrenal board here.
Adrenal cortisol blood tests have two ranges AM and PM. Naturo paths over here tend to use 24 hour (4 points in the day) adrenal saliva tests. - BUT MD's dont even know what that is!
Adrenals effecting thyroid T4/ T3 conversion - I,ve researched a lot on adrenal/thyroid, conversion was not something that I seen related. Like Barb said you need enough T4 to convert.
Very hypo people sometimes have ill symptoms when ramping up thyroid med to the right dose. I did to some extent, you just do what you have to do. And brands of thyroid med can make a big difference in some people. We have a lot to choose from , more than the UK from what I see posted here. As barb said, some from UK have used T3, with some special approval ect. You need to get that T4 up and then see how your Free T3 is doing.
Hi, I found a UK site which shows you do have a few other thyroid replacement medications to choose from. What is apparent though is that a few contain acacia as a filler, this causes many people issues.
Maybe you could ask to try a different brand?
This is the link, but you will have to copy and paste it.
I am a little bit confused, but from all the comments, I feel a bit more aware of some of the conflicting issues in the management of the condition. I really appreciate it, thanks.
When I was put on Levothyroid at the end of 2007 I was put on 100 mg and I did have a violent reaction to do it. I went away to Venice, but I spent the weekend on my own very sick: I felt unbearably cold with diarhea and extremely confused. I didn't have a nice time. I know how sensitive the body is about these things. The doctor did try again and started me on a l ow dosage, but Barb135 you appeared to suggest that the body may have developed an allergy to it.
Another strange thing that happened is when I was on 100mg at one point I chose not to increase the dosage as recommended by the doctor, as emotionally I felt not right on them but my T4 was 12.8mol/h and TSH 83mlul he actually wanted me to go up to 200 mcg slowly.
I was tested again 3 months later my range went back to normal without the increase of dosage, therefore I lost trust in the result testing system, that is when I started to doubt how it all works. But i still did not feel good. So later on I went further to see if it would balance automatically whatever the dosage. Immediately, I felt physically better and it is interesting that this may be due to a high from the adrenals so that is interesting.
However the quality of my life was so much better. I lost a lot of my fear and brain fog and to some extent it has not come back since. However the reality is that I am still very hypo. I have taken small dosage recently and the spasms came on again, my joints are weak still, but on the levo again, i got cramp and I found the muscles in my hands and feet sticking in pain. This is just to uncomfortable for me, so I stopped again. I know this independent but I have lost trust in how all of these things work. I come from a completely drug free way of life to some degree.
The specialist doctor who I saw the last time told me to stay off it as he obviously could see I was doing a lot better, I was obviously a heart sink case when he recommended 200. I had my heart checked after that and a brain scan. I will be going to see him tomorrow for the results which will be interesting.
and this is where I am up to now.
I have test for anti bodies for Thyroid Peroxdidase antibodies HI 404.0 IU/ml (0-49)
so I think that means I have an Hashimoto auto immune condition.
Thanks for the advice. I have so far noticed the MD's we call them GP's here are in the dark about many things. So we have no alternative to research, it does appear I have not had a proper assessment regarding my adrenals, by your suggestion.
Regarding the connection with adrenals and thyroid, the main authority I got on it was by Dr Barry Durrant-Peatfield 'Your Thyroid ad how to keeep it healthy" - you may want to check it out, the main bit on p113
Yeah thanks for that.
I am really on Adrenal Stress and diet management now and it is really helping so far. Atleast the 'pain-gate' has been lowered a great deal. It is obvious that health is connected to emotions, especially the management around discomfort. Dr Barry has been really helpful regarding this.
I will check out everything you say, thanks.
Well the most common thought is that if you have had undiagnosed or under-treated hypothyroid for a long period (how long?) - you will possibly have stressed adrenal glands. And taking thyroid meds might be difficult. This, technically is only unproven therory as far as actual medical doctors are concerned. But yes, most recognize this 'therory' here. Many take supplements to support adrenals such as different variety's of adrenal adaptogens. It this the 'connection' you are mentioning?
If this book goes into more detail than the above, I will look into it.........?... Pricey over here, imported from you guys.
When you mentioned Adrenal - Thyroid connection, I thought your were talking about something more proven in thought and recognized by modern medicine.
It is interesting how 'modern medicine' seems rank illness into two categories, you have or you don't. Makes no sense. Its like saying all car tires are either completely flat or always at correct pressure. No in between. Stressed adrenals or fatigued adrenals are in between and ignored over here, sounds like over in the UK too.
No, I wasn't suggesting that you had an "allergy" to the med; it's just that some people are very sensitive to medications; therefore, they have to go much slower, when getting their levels up. From what we see, once a person has a strong reaction to the med, it seems harder to get back on track.
Part of the trouble could be fillers in the pills, as well. That little pill isn't all hormones; it has other substances that hold the pills together, etc; some people can't tolerate those. Each manufacturer may use a different filler, so maybe if you can't tolerate one, you could another.
It's not uncommon to feel worse when changing med/dosage, and it is very uncomfortable. Sometimes, you just have to "tough it out" for a while, until your body adjusts to having the hormones again. You could ask your doctor for a very low dose - like maybe 25 mcg, then split that in 1/2 to make 12.5 mcg (or even quarters to make 6.25 mcg) and see how that goes; once you adjust to that, you could then go up to the full 25 mcg, As you get used to each "step", you can go up by another 6.25 or 12.5 mcg until you reach a maintenance dose.
It takes longer to get well, when you go slower, but you get there with a lot less hassle.
Cheers, I appreciate everyones replies, I did see a doc today and he told me my heart is fine and pituitary gland in my brain looks nice and plump.
I asked again for T3 treatment and he said fine as he said I was quite rare, this is coming from a top specialist in London, he prescribed Liothyronine 20 micrograms, I have to cut up the tabs really small to begin of. The drug also contains Lactose and Sodium Chloride. Thanks redheadaussi, I think I got the message regarding fillers now. It was funny when I went to a busy hospital phamacy, the phamacist asked me so many questions regarding it, she had not come across it herself, this reflects I suppose how uncommon to get it in England. All these chats and study does come in helpful to getting docs on your side, if you appear to talk with a bit of informed and reasonable questions.
Good old Sodium Chloride is just salt! So that is not a problem! Lactose is a milk protein, so unless you are seriously allergic to lactose and not just an intolerance, you should be ok.
Yes! Many professionals have no true knowledge of certain things, but I guess their brains can only hold so much information, hence why we, as thyroid patients need to be our own advocates and learn about how our bodies and medications work. Then we can work together with the professionals. I know I am educating my own GP (I'm in Australia) on the Hurthle Cells I had in a nodule. He is more understanding of my need for regular blood testing than he previously was!
Go slow with your T3 it can give you a rush and might make you a bit 'hyper' in one sense, it needs to be taken regularly as it is only a 4 hour type medication, rather than the half week life of T4.
Do make sure you get tested regularly, as even the slightest extra dose can be too much for some people. BUT it is FANTASTIC you were able to get some! I am jealous!
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