Hashimoto Question

[ccg123]

Hi

I have recently been diagnosed with Hashimoto’s but I am getting conflicting information from different doctors. My rheumatologist started me off on 25 mg of levothyroxine. But my Endo and ENT said I don’t need to be on it yet. The Endo said 25 mg was pointless. These were the results before I started.

T3 6.5 pmol/L (4.2. - 6.9)

T4 11.1 pmol/L (7.7 - 20.6)

TSH 3.22 mlU/L (0.30-4.80)

I had another blood test since going on the thyroxine and the results I have are now below, which I assume shows that it is working?

T4 15.4 pmol/L (12.0-22.0)

TSH 1.51 Miu/L (0.27. - 4.2)

It would be good to know if anyone else started taking 25 mg on a TSH Level within the “normal range” and if it helps them in anyway? I have read lots of conflicting information about ranges.

Many thanks for your help. Very confused!

C

[Heloise]

Hi ccg, Both points have some merit. 25 mcgs of levo is very tiny but it certainly had an effect. Your TSH at 3.22 means your thyroid wasn't producing quite enough but would you rather wait and see just how high or how ill you would become? What is more astonishing is how high your FT3 is. This should mean you are feeling rather well but it can also mean you have some sort of resistance and not using it effectively.

Your rheumatoid doctor must feel your symptoms were due to low thyroid. I'll vouch for that since low thyroid causes muscle pain. Here are the ranges that Stop the Thyroid Madness suggests. stopthethyroidmadness.com/l...

Each lab has their own set of ranges so this is an interpretation for those results.

[ccg123 in reply to Heloise]

Thanks will take a look at the website link!

[MissGrace]

Your endo needs to go back to school. 25mcg may not seem much to them, but I have a really strong and sensitive reaction to Levo and even 25mcg can have a noticeable effect. Heloise makes a good point - are they going to wait until you become really unwell as some kind of test? My doctor didn’t believe my first set of thyroid results because I wasn’t overweight, even though they showed I was severely hypo - my TSH was 40 and the T4 was way below range. So he made me wait another month and retest even though I had passed out a couple of times and could barely function. By that time the levels were even more extreme. Sometimes I think he was trying to kill me! Anyway, the second time I passed his test and he prescribed some Levo. Then when my TSH came down and T4 went up (though both still not in normal ranges), he said I didn’t need anymore Levo as the levels had reduced. At that point, I went private as I had read enough on here (and still felt like a zombie) to know he was a fool. There is some excellent info on this site and great support. Hopefully, it will help you to fight to get what you need to be well. Good luck.

[ccg123 in reply to MissGrace]

Thank you! Good to hear other people’s experiences.

[TSH110 in reply to MissGrace]

How can we win if they insist on relying on TSH yet it comes back as 40 and they refuse to believe it. What sort of science or medicine is that? Passing out could really land you in big problems. I had an episode riding my bike in a group I just fell into the road not even lifting my arms to break the fall wallop right on the ground and then the person behind me rode over me causing a huge bleed in my leg. I was out cold so was unaware he had run me over and the rest kept stum I did think my injuries were very odd but it made sense when I rmfiubd out it was not just a fall due to syncope . I spent the day in hospital passed out leaving they still got rid of me in a wheel chair instead of crutches. I could hardly walk for 3 weeks and my leg was black from bruising and got a huge hematoma in my thigh. When I went to the drop in centre (stupid doctor did not even sign me off from work saw another one who did on their advice) they asked if it was ok for all the staff to see it because it was the biggest they had ever encountered. The concussion did me no favours either I still have a dish in my thigh which is the scar of that disgusting hematoma. I was afraid to cycle in a group or alone after that and lost a lot of confidence. I am sure it was due to undiagnosed hypothyroidism. My mother was the same - often passing out and undiagnosed for decades (her fault because she went into total denial and refused to see anyone, unlike me who was just fobbed off repeatedly) she lost her front teeth smashing her face in. Fancy any doctor not considering how serious passing out might be and not having the wit to relate it to a TSH of 40 - it is a know hypothyroid symptom. One despairs at the state of Thyroid medicine in the UK I was like a stick insect until the last few months when I went totally haywire as my thyroid died completely. Being overweight although common with the disorder, does not equal hypothyroidism some of us are normal weight or thin.

[MissGrace in reply to TSH110]

That’s terrible. I hope you are better now. I’m so sorry that happened to you. x

[TSH110 in reply to MissGrace]

It has made me a better person with more understanding of the disorder and greater compassion for others. In a strange way it was interesting to see what happens when ones body goes completely wrong and to experience the long haul getting oneself back to health again. For a long time I used to think blimey all we are is a bunch of hormones 😱. Also I am very grateful I live in times when treatment exists for it, unlike all those poor devils before us prior to 1898 or whenever the first treatments ensued, they must have suffered horrible deaths. I try to remember every day is a bonus and to make the most I can of it!

[FancyPants54 in reply to TSH110]

That was a horrible accident. What I don't understand though, is how you had the energy to even get on a bike, let alone push the pedals round. My TSH is now at 5.3 and I'm still totally devoid of energy.

[TSH110 in reply to FancyPants54]

That was early days for me I just got strange symptoms and often I had loads of energy - too much in fact so that I did not know what to do with it I ran and cycled and played badminton and swam and still had energy to spare, I only slept 4 or 5 hours a night 😳 I just thought it was normal and I was an energetic person (your’e not kidding!) . It was only in the last year or so of illness that physical activity started to get really tough along with everything else. I have wondered if initially I was more overactive than underactive and as the antibodies destroyed the thyroid, hypothyroidism became the norm with short bouts of hypo where I could suddenly run 10 miles fast without effort when I had been virtually comatose a day before.

[FancyPants54 in reply to TSH110]

I see. Yes, that does sound rather like you were hyper at first and then dipping in and out before settling at the hypo stage, which I think is the normal progression. I have very few antibodies. My experience has been a slow and gradual decline in energy levels to the point of sloth. Very occasionally I will get a few hours of energy and I can walk with proper strides and pace or get some housework done. But it never lasts long. Just trying to work up from 100 to 125, but doing the first week by cutting the 25 tablet in half as I sometimes get reactions to increases.

Now encumbered by a horrible bug. Gosh, I got through winter last year with no colds. This is horrible.

I long to ride my bike again and go cross-country walking. I've been a cave dweller for 6 years!

[TSH110 in reply to FancyPants54]

I felt like that everything was so utterly exhausting and I became so unsteady on my pins I had to stop cycling as I feared I might topple off fully conscious! My first two years on levothyroxine were awful I got fatter and fatter my mind was vacuous as was my personality which had got up and gone. I only started feeling properly better when I switched to NDT and have never looked back. I might have just been an energetic person after all as I feel full of energy again like my old self. I have the DIO2 mutation that causes poor conversion from T4 to T3 so that might be why I never felt well on levothyroxine. Both my mother and sister had/have hypothyroidism and found/find levothyroxine really good.

[FancyPants54 in reply to TSH110]

It's good to hear the success stories. For me, apart from the 19 stone of fat I'm lugging around, the biggest visual clue to my health issues is my house. Once neat, clean and shining with decorating up to date and thoroughly done and restoration projects on the go, it's now dirty, drab, cluttered and untidy. I can see the cobwebs and dust balls and dirt and I just walk past it to sit down. It's so unlike the me I used to be that I don't recognise myself.

But I've been on 112mcg Levo for nearly a week and despite this hideous bug, I think I might feel a little better. I will move up to the full 125mcg at the weekend. I have also recently changed my HRT and I think that's finally doing better too.

Gosh it's a long hard road isn't it. And we get so little help. I have tried NDT and even T3 only in the past because no GP would prescribe Levo as my TSH levels of around 5-7 were deemed "fine". The NDT did help, but I think my adrenal glands were worn out so I never felt quite right on it. I tried the Recovering with T3 method for T3 only. That was a tough call and due to signs not changing much I ended up over medicating on that. I weaned off, suffered hideous issues during the wean, but got clean and for a while my TSH was OK, less than 2. But then it started to creep up again. At the 4.8 mark my HRT doctor said I needed some Levo and so I began. I was pleased to get the prescription, but she messed the dosing around horribly and I ended up much worse. I think, now I've more or less taken over and determine my own blood tests and dose increases, this raise to 125mcg will probably bring my TSH down to about were it was when we first started 15 months ago. Taking too little a dose for too long pushed my TSH up to 10.3 and I felt awful. My fear is that she will stop writing me the private scripts because she's nervous about how much I am now taking and my GP is also saying I'm within range even though I'm not. I so hope I'm not left trying to buy the stuff because we could be in for a very hard time of that come March. If you import your meds, it would be advisable to build up your own little stock pile in case we crash out and have no working International postal system for a few months.

[TSH110 in reply to FancyPants54]

That is so awful FP54 your condition and medication have been totally mismanaged. At least My Endo aimed for TSH between 0.25 and 0.5.have you shoved a copy of the Toft article in front of these utter incompetents? Might give them a clue of how to help get rid of symptoms. You should ram it in front of them and refuse an ineffectual dose of levothyroxine telling them to follow his guidance and keep increasing it until you reach those numbers - if Toft is good enough for the Queen he is good enough for you! I put on 5 stone on levothyroxine it has all gone bar half a stone now on NDT. Pity it did not work out for you - worth a second go? One interesting thing is I am just the same in the home front. I used to keep it spotless and Spartan now the disorder and chaos rules me and makes me want to cry the task of sorting it all out has become so overwhelming I do not know how or where to begin. My hypo sister is exactly the same but can afford a cleaner to keep a thin veneer of domestic tidiness in the place but open a cupboard OMG shut it fast before it all escapes! Another hypo pal is the same it must be related to the disorder given we were not like this before succumbing. Yes one hell of a battle I’d call it surviving with hypo. 😳🙄😊 the disease the treatment and the medical profession calls for a three pronged weapon - a metaphorical trident, I believe!!

[FancyPants54 in reply to TSH110]

I haven't been refused a dose increase yet, just mutterings that 125mcg is probably going to be enough(!) (I don't think it will be). At the point when they do say "no more" then I'll ramp up the fight. The one good thing is that because my TSH kept rising on Levo, I do have an endocrinologist appointment at the end of October. So perhaps I'll get a bit better treatment there. If not I will do it myself. But I'm not prepared to try NDT again until I know I can get an uninterrupted supply and as I am a small business currently importing American goods and selling to the UK and European markets, I'm not at all sure that will be the case. I'll stick with Levo until I know that.

I'm disappointed that you say although you have lost all your weight and feel better again, you haven't recovered your mojo for the house. I really want to get that back. I live in a house that is hundreds of years old and it deserves better than me at the moment. I have trained in traditional building skills so that I can undertake sympathetic restoration, but it's 6 years since I last did anything. There are areas with no plaster on the walls and floor repairs that need finishing and decoration inside and out... So sad because I loved doing all that. I was never inside or sitting down. I lived in overalls and went outside after breakfast and back in for dinner at night, usually covered in dust, sawdust, plaster dust, paint dust or garden dirt. I even did conservation repairs for other people in old houses. Now I can't be bothered to clean the kitchen floor. How dare our GP's tell us we are OK!

[TSH110 in reply to FancyPants54]

House stuff was never my passion but I am devoted to my allotment and I have that looking pucker and producing stuff like crazy. Once you are wellt, he enthusiasm for your

restoration work will come back - it sounds really amazing! You need the energy that comes with a balanced body and you will be flying! Don’t beat yourself up over it - it is not your fault but an unfortunate quirk of fate - having the patience of Jobe is helpful with this disorder I have found! One has to try and keep positive and see the successes no matter how small they might seem. I hope you get a good Endo and there is always good advice and support to be had here 😊

[Treepie]

Often a dose that small can make things worse as the Body senses the extra hormone introduced and reduces its own production so you have less overall.This is why 50mcg is usually the start dose.

But this does not seem to apply in your case .We are all different!

[ccg123 in reply to Treepie]

Thanks. I definitely don’t feel worse.

[TSH110 in reply to ccg123]

They started me on that because of angina it did save my life I felt a little less cold after one dose but I was very overt so felt very dreadful for some time as they very gradually ramped it up to125mcg then I just felt dreadful! I switched to NDT and have felt normal on that 😊

[Eliotf]

My personal opinion is you should never have been put on any medication, UNLESS you were feeling crappy an the doctors ruled out any other causes. The doctor should be running all sorts of 'elimination' test to rule out anything and everything such as hepatitis, STDs etc etc. ALWAYS go to a specialist after you get a basic dx from a gp. Go get a second opinion from a specialist if the gp and the first gp don't agree

[ccg123 in reply to Eliotf]

Thanks. Will check it out further

[Eliotf]

Some of the thyroid issues are how do you feel, how do you look. They would check me for pinpoint eye (like speed) nervous twitches (like speed) sluggish, gaining weight, sleep issues. Thyroid issue are generalized and can be caused by many other things

[TSH110 in reply to Eliotf]

And thyroid symptoms can be mistaken for many other things even when a cluster ought to be a warning sign along with a family history of it. I wonder which is more common - over diagnosrs of thyroid disorder or underdiagnosis. I know what my money’s on and what my experience had been.those results look like hypothyroidism to me.

[Eliotf]

I only hear the gossip and agree with you - over diagnosis. The problem with any thyroid supplement is that your thyroid notices that a supplement is being provided, it does not have to work hard and then gives up working and so therefore you are stuck on it for life.

I am now a very nicely outspoken patient. What where, when, why and the consequences. I always bring my lab work with me, which means I have seen it and now am ready to ask questions.

[TSH110 in reply to Eliotf]

Yes I know that 25mcg is not supposed to be very good long term and 50mcg is really the starter dose, unless like me there are other complications. In other countries those blood tests would be accepted as hypothyroidism and treatment would begin. I wish I had not gone through what I did and had been treated before things got totally out of control. My health has been permanently impaired in ways that I am sure could have been avoided with early intervention.

[Eliotf in reply to TSH110]

I am so sorry to hear that you got screwed up. One of the things I learned late in life (there are too many to list here) is that the range scales the medical professionals use is only a general guideline. Now I highly suggest that a healthy person goes and gets a medical work up with a whole bunch of blood tests to get a general base line. The other important item is that test result are only a snapshot in time and most of the time it is the trend over several test results

[humanbean in reply to Eliotf]

I only hear the gossip and agree with you - over diagnosis. The problem with any thyroid supplement is that your thyroid notices that a supplement is being provided, it does not have to work hard and then gives up working and so therefore you are stuck on it for life.

In the UK the biggest thyroid problem by far is under-diagnosis rather than over-diagnosis. Doctors want to put off treatment even in the face of symptoms that are destroying the patient's life. And the older you get the less likely you are to be treated at all these days, because doctors have decided that a TSH of 4 - 6 or 6 - 10 is normal for the elderly.

I have never seen any research showing that the thyroid gives up the ghost permanently if a patient is treated for hypothyroidism inappropriately. There are plenty of body builders that use high dose T3 then wean themselves off it, repeatedly. Apparently some of them do develop hypothyroidism after doing this, but most of them don't. Perhaps they already had some thyroid or pituitary problems and just weren't yet aware of it.

[Eliotf in reply to humanbean]

The feedback loop is between TSH and T4. I have never heard that T3 affects the thyroid the same as T4 supplements. If the person is feeling like crap and the numbers TSH or the T4 numbers are close to the edge of normal may not be normal for that person and so may need supplement. A lot of the thyroid issues are how the patient feels and is acting

[TSH110 in reply to Eliotf]

I agree that it is all very personal each of us has their ideal numbers and the the one size fits all is as helpful as giving someone the wrong sized shoes and being surprised if they cannot walk in them because they do not fit the feet of the wearer. I also agree not enough attention is paid to symptoms like they did in the old days prior to TSH testing and when NDT was the usual medication.

[TSH110 in reply to humanbean]

High doses of T3 were the most effective treatment for sufferers of bipolar (especially fast cycling bipolar which is difficult to treat) in a large study. The high doses were well tolerated and did not appear to cause hyperthyroidism. See:

mdedge.com/sites/default/fi...

That would support the idea that extra thyroid hormones do not wreck the thyroid. How did Karen Carpenter live for so long on 10x the therapeutic dose of levothyroxine despite not having hypothyroidism. She died of a heart attack which the excessive and totally unnecessary medication must have provoked but the fact she survived so long (years I believe) on that crazy regimen shows the body can tolerate a bit too much T4 (or in her case a huge amount too much even though it did for her in the end) even if it is not needed. It cannot be that simple and basically no one really understands it anyway - not doctors, scientists or researchers.