Thyroid test...desperate for advice: Hi again I... - Thyroid UK

Thyroid UK
104,620 members121,417 posts

Thyroid test...desperate for advice

Batty1
Batty1
49 Replies

Hi again

I just got my new thyroid lab information and Cholesterol retested after 8 weeks on 88mcg synthyroid and 10mcg Cytomel and I'm thinking things went from bad to worse and I'm worried that this crap thyroid stuff is going to destroy what remains normal.

Anyway my cholesterol 8 weeks ago was hideous and my Endo decided to recheck my cholesterol and change my thyroid meds and retest my thyroid levels because on Armour Thyroid 2 grains put my TSH <.014 and honestly I think I was starting to feel it my hands would shake. Now although I feel better less joint pains but my weight has crept up 2lbs inspite moving a lot more and vicious fatigue I had and low pulse rate.

Please tell me what you think, I realize TSH isnt as important test but this is what they do I also had FT3,T3 NO Ft4 although it was on lab not sure what happened to it.

TSH: 1.46 (0.27-4.20)

FT4:0.92 (Below Range) on lab report (0.93-1.7)

T3: 90.5 (80-200)

(8 weeks ago) Armour 2grains

Ranges above.

Tsh <.014

T3: 121.8

Ft4: 1.10

Cholesterol LDL jumped like 20 points and I've been much more active recently.

Doing this on phone so pls forgive!

49 Replies
oldestnewest
Lora7again

I think you need an increase to get your TSH around about 1 this should hopefully raise your T4 and T3 - How do you feel?

Reply
Batty1
Batty1
in reply to Lora7again

I feel ok better then I have in a long time with the exception of low pulse that at times makes me want to pass out and this vicious fatigue that makes me feel like jello and horribly high cholesterol and I'm serious it's stupid high its increased in 8 weeks and I have horribly slow digestion and gained 2lbs in 8weeks even though my activity is up.

Beside all that I feel ok

Reply
greygoose

Without the FT3, these labs don't tell you much. But, your TT3 is so low, your FT3 probably is, too, and that's why your cholesterol has jumped up, and why you have more symptoms.

TSH doesn't make you feel anything, whether it's high or low, it doesn't cause symptoms and it does not make your hands shake. Nor does cholesterol. In fact, high cholesterol isn't any sort of a problem in itself. It just indicates that there's a problem somewhere in the body. And, with you, that problem is more than likely low FT3.

88 mcg levo and 10 mcg T3 is a silly little dose. Hardly likely to make you well. Reducing you from 2 grains of NDT to that gave you a massive reduction in dose. Far too much in one go. Taking any amount of T3 is going to cause your FT4 to be low, but yours is below range. So, you probably need an increase in that. And, I think it's pretty certain that you need an increase in T3 - which will also cause your TSH to drop. In fact, it being over 1 when taking T3 does suggest that your dose of T3 is too low. One would expect it to be suppressed if you were on the right dose.

But, don't increase both at the same time. I'd go for the T3 first, and increase of 5 mcg. Then, two weeks later, 25 mcg levo. :)

2 likes
Reply
Batty1
Batty1
in reply to greygoose

Hi GreyGoose

Your probably correct my FT3 is most likely low but wasn't too bad on last lab test prior. Ft3 was ordered I saw it not sure why it's gone my endo has to review results before they release them for me to see maybe he removed it..dont know why he would.

I definitely need increase of synthyroid but I'm good with Cytomel at 10mcg I've been on 15mcg before had issues then too but no issues on 10mcg ...5mcg never gonna happen I was mentally unwell on that.

1 like
Reply
Lora7again

greygoose I know you have a lot of knowledge but some people's TSH does affect how they feel mine is 0.70 at the moment and feel great. However when it was suppressed 0.001 I felt dreadful and wasn't sleeping at all .... I looked great and my skin was glowing but my thyroid was overactive and eventually I crashed and became bedridden. I have also had a TSH of 9 because my doctor gave me too much PTU and felt very ill. Also when I was admitted to hospital with chest pains and sweating, shaking etc. They tested my TSH and it was 0.54 which wasn't the right level for me. I am not on any medication at the moment but I believe my antibodies are very high which you think has no affect on me .... I just don't agree with all you say ... sorry. I am not medically trained but I have taken advice from a lot of people in the UK and the USA and everyone is different and what might help one person can make another feel unwell. No offence to you btw but this my opinion.

Reply
helvella
helvellaAdministrator
in reply to Lora7again

I think what GreyGoose is saying is that the TSH itself doesn't make you feel anything.

The thyroid hormone levels which, in you, are associated with feeling well reflect a particular small range of thyroid hormone levels.

In some people, the TSH number does correspond to how well (or otherwise) they feel because, when they have their optimum thyroid hormone levels, that is where their TSH lies.

Reply
greygoose

Is the TSH all your doctor is testing? If so, they you won't get the full picture. I imagine that when your TSH was at 0.001, your FT3 was very high, and it was the high FT3 that made you feel bad, not the lack of TSH.

The TSH is high when FT3 is low, so once again, you would feel bad, but due to lack of T3 not excess TSH. The TSH just reflects the levels of the thyroid hormones.

The TSH is not a thyroid hormone, it is a pituitary hormone. It has two jobs: a) it stimulates the thyroid to make thyroid hormone; b) it stimulates the production of deiodinase to convert T4 to T3. It doesn't have any effect on other cells in the body.

T3 is the active thyroid hormone needed by almost every cell in your body to function correctly. If you have just the right amount, you feel well. If there is too much or too little, the cells either over-perform or under-perform causing symptoms. The TSH just follows behind the FT3, indicating if you have too much or too little by being too high or suppressed.

I realise we are all different in how we feel and the way we react, but the TSH only ever has the same functions in everybody. I'm not medically trained, either, but that's basic endocrinology, you don't have to be a doctor to understand that. :)

Reply
Batty1
Batty1
in reply to greygoose

Hi.

My FT3 was never high on any combo of thyroid meds, even with a very low TSH.

This is why I'm confused .

Reply
greygoose
greygoose
in reply to Batty1

All sorts of scenarios are possible. The TSH test is infinitely faillible. But, if someone only gives you a TSH result, you have to guess, and that was my guess. It could very well have been that her FT3 was still to low to make her well. But, given the fact that she said her TSH went high, I'm guessing that her TSH is more reliable. But, whatever the case, it still wasn't the TSH making her feel ill because TSH itself doesn't make you feel anything.

Nothing with thyroid is hard and fast and set in stone - which is where most doctors go wrong and why they don't understand that just testing the TSH isn't enough. There are many, many variables, and there skill should be in recognising those variable and taking them into to account. But, the reality is that they're just as confused as you, although they pretend the contrary. :)

Reply
Batty1
Batty1
in reply to greygoose

If thyroid was just straight forward we all would be in a better place.

I cant imagine that such a small Decrease in meds would have such a big impact on my numbers...considering my thyroid meds have pretty much stayed the same. I was on cymbalta for 2 months before I did labs didnt take the pill day of lab, I told the Endo cymbalta is to blame for .<014 TSH ...nah he said.

Reply
greygoose
greygoose
in reply to Batty1

But, it wasn't a small decrease:

88mcg synthyroid and 10mcg Cytomel

2 grains of NDT would have given you 138 mcg T4 and 18 mcg T3. So, you had a reduction of 50 mcg T4 and 8 mcg T3. That's enormous!

a) T4 should only be reduced by 25 mcg every six weeks

b) T3 should only be reduced by 5 mcg every two weeks

c) T4 and T3 shouldn't be reduced at the same time.

Your body must be pretty shocked.

And it doesn't really matter what caused your TSH to be suppressed - actually, it was the T3 in NDT and your endo should know that! - the fact is it doesn't matter and he shouldn't be dosing by the TSH. He knows nothing about thyroid, and if I were you, I would run as far away from this… uneducated person as fast as I could. He will make you ill and keep you ill.

Reply
Batty1
Batty1
in reply to greygoose

No, Armour 2 grain was (74) T4 and (18)T3...number might be a little off but close...so really not big except T3

Reply
greygoose
greygoose
in reply to Batty1

Oh! So sorry! My maths is way off. As far as the T4 is concerned. But, it was still a reduction of 8 mcg T3, which can make an awful lot of difference.

Reply
Lora7again

Well I can't get a full thyroid function test off my surgery if my TSH is in range so I will have to pay as usual even now after I was admitted to hospital. I have purchased a medichecks thyroid blood test does anyone know when they expire because I was going to wait until November before I get a blood test?

Reply
greygoose

I understand that. And I wasn't criticising you. But, the fact remains that if only TSH is tested, you don't have the full picture, so it's understandable that you thought the TSH was causing your symptoms. I was just explaining why it wasn't the TSH.

1 like
Reply
DebTex
DebTex
in reply to greygoose

I’m on 88mcg levo like Batty is and just 1/4 of a 5mcg T3, I know it is a small dosage of both, but in the past when I tried taking 100mcg levo alone I had tachycardia and palpitations so now with the 88mcg levo I’ve gotten up to 3/4 of 5mcg T3 and I had too many palpitations so I went back down. I have hashi’s and still having under medicated symptoms. My question is, I’m just a small person, 5’4” tall, 110 lbs. does your weight have anything to do with how much thyroid meds you need or can take? I’m thinking I can’t handle very much thyroid because of my size, is that crazy?My last labs showed that I’m under medicated and I’m working on my low vitamins and minerals, don’t know what to do next.

Reply
Batty1
Batty1
in reply to DebTex

Hi deb,

I have no thyroid and I read yes/no dosing by weight. I just dont think it's as simple as weight.

Reply
DebTex
DebTex
in reply to Batty1

Thanks Batty, you’re probably right, I get some crazy ideas in my head. It all gets pretty frustrating.

Reply
DebTex
DebTex
in reply to Batty1

I hope you get everything sorted out for the good!

Reply
greygoose
greygoose
in reply to Batty1

Weight comes in when someone has a TT. Their first dose of levo is based on their weight, and is adjusted as they go along. A lot of people misunderstand that, and believe it applies to everyone, that's why you get contradictory replies.

Reply
DebTex
DebTex
in reply to DebTex

Forgot the second thing that I was thinking is that maybe larger, heavier people need and can handle higher dosages of thyroid meds than smaller people?

Reply
greygoose
greygoose
in reply to DebTex

No, it doesn't. I'm not very much taller than you - 5'5" - and I take 75 mcg T3 only, with no problem.

If you're working on your vits and mins, the next step should be to investigate adrenals.

1 like
Reply
DebTex
DebTex
in reply to greygoose

I will check into that, thank you greygoose!

Reply
greygoose
greygoose
in reply to DebTex

You're welcome. :)

Reply
DebTex
DebTex
in reply to greygoose

You are so fortunate that you can take the kind and amount of thyroid that you need without any problems, wish we all could!

Reply
greygoose
greygoose
in reply to DebTex

I only can because I self-treat. Anybody can self-treat. Last time I saw an endo she said my TSH wasn't to go below 0.25 and I only needed 50 mcg T3 maximum (another psychic doctor!). So, I thought blow that for a game of soldiers! lol I've self-treated on and off for a long time.

Reply
DebTex
DebTex
in reply to greygoose

You are so funny 😆 sounds like you are definitely on the right track though!!! I’m messing around with the T3 that I have left over from earlier this year when my Dr. had me trying 5mcg T3 twice a day with 56mcg levo and It didn’t work of course, I can’t even seem to go over the minuscule amount of T3 that I’m taking now🙄

1 like
Reply
SilverAvocado

I'm a bit confused whether these are freeT3 or total T3 results? Either way they've dropped a lot. They've gone from bottom third of the range (which is very low for a freeT3), to right F the bottom of the range. From low to very low. The TSH has also raised to a level higher than I'd expect someone to feel well on, most of us need a TSH well below 1, probably suppressed, to feel well.

This is somewhat expected because you've cut your T3 intake almost in half.

You've had some suspicions that these tests aren't accurate I think, and that your true freeT3 might have been better than it looks based on your symptoms? These results definitely suggest you just need an increase. And the symptoms are very consistent, high cholesterol, fatigue, weight gain, low pulse rate. High cholesterol is a marker for being hypothyroid.

You mentioned that you still feel better overall? In that case T4+T3 might just suit you. When I first tried NDT I felt in some way better in myself even though I took a huge dose decrease and was barely able to move with the fatigue. I would suggest and increase and trying to find your sweet spot on this dose. If you suspect you were overmedicated on 2grain and the blood tests were very inaccurate, go super slow. A usual low-ish increase of T3 is 5mcg, you could have that. Or if you really think your sweet spot could be near, reduce an even smaller amount.

Its good to have the pulse data, that's a good way to monitor, along with temperature, and good symptoms notes, if you distrust the thyroid panel. Cholesterol test is also a good test for you if you think the thyroid panel might be being distorted with other medication. The cholesterol may not be distorted and should track your hypothyroid status.

Reply
Batty1

Yes, I suspected this lab test would be ugly and I was correct.

When I switched from Armour to the Combo synth/cytomel I also stopped Cymbalta since I believed my TSH <.14 was directly related to Cymbalta and I think I was correct here too, but trying to convince a person (Endo) with superiority complex that Cymbalta was my cause of super low TSH and I was worried that my shaking was becoming worse and maybe this too was the Cymbalta (not sure).

I do feel better minus those few things however they are pretty big things to ignore and I definitely need and increase but I dont think its Cytomel I need since I've been on 15mcg cytomel and had issues too. Maybe I need my Synthyroid moved to 100mcg.

The FT3 lab was ordered I saw it and once my labs were completed it was gone. I know I cant see my labs until my Doctor does so maybe he removed it...I'm not sure but I'm not liking my cholesterol levels actually going higher in 8 weeks and 2lbs wt gain when I've actually been active and I no that their is no way I ate extra 7,000 calories I feel water logged actually.

Reply
SilverAvocado

With being hypothyroid you can gain an amount of weight that is theoretically impossible in terms of calories consumed. I have no thyroid and have gained approx a stone (14lb) in a week or less every time I've been off hormone altogether. Ironically being active can be worse than resting, as it's using up your T3, increasing your activity is effectively a dose reduction. I've had very good results using rest to combat fatigue, doing less but feeling much better while doing it. If you're very lucky you may be able to lose weight or stabilise by reducing your activity.

I'm not sure of the mechanism, but anti-depressants can disrupt your body's ability to use thyroid hormone (as so many things can). It's great that you've managed to come off them and definitely something to celebrate as it can be extremely difficult to kick them!

Whether to increase T4 or T3 is a bit of a judgement call. There is no right answer and some unusual people need freeT4 to be at least halfway thru the range as well as freeT3 high in order to feel well. Both of yours are super low at the moment, so it's fine raising either.

A TSH of <0.14 is not particularly low. Most people will need a supressed TSH to feel well, often in the region of 0.05 or less. You can't really infer much from TSH, unless it is very high. It can't really show that you're overmedicated, although doctors may freak out if it goes below range.

Symptoms very much like overmedication can also be caused by being undermedicated. This is said to be because of adrenal problems. The adrenals are worth looking into anyway, as they are one piece of the puzzle to get thyroid hormone working well. The first step is to get a 24 hour saliva cortisol test.

Edit: If increasing T4, 25mcg is a standard increase.

Reply
Batty1

I did stress to my Endo that something is not right that I've been on just about every combo and my numbers always look bad and I feel bad all the time.

I also stressed to him that I believe that my cosentyx injections are also messing with my test results ...I finally found my proof that it does a Govt medical study on immunosuppresive drugs do in fact state that immunosupressive drugs can falsley alter TSH results and my medication has been changed solely on my TSH which has probably created all my health issues over the past 3 yrs.

I'm going to talk to him but what do you think the increase should be if not 100mcg ? I'm good with Cytomel .

Reply
SilverAvocado

Very often Endos will be completely useless :p And they know very little about the blood tests. It seems like once we get even a tiny bit complicated and beyond the total basics there is nothing they can do. I'm not sure an Endo could comprehend blood tests not being accurate!

Do you think it's only the TSH that is being distorted and not the free hormone results? Really the TSH is pretty irrelevant anyway, and there's a lot of individual difference. Some people are unlucky and it is pretty low or unresponsive. Some people are lucky and their TSH responds as doctors expect. Looking back over the note I've got of your old test results, your TSH has often been lower than I'd expect. It's been worst more recently, in your two year old results it doesn't look too bad, but the set where it was 0.14 it looks quite a bit lower than I'd expect given your free hormones.

You mention you've been on every combination, but have you ever had your dose increased or adjusted every 6 weeks until it looks well? According to what you've posted on the forum, it looks like you've been on a nearly identical sized dose all the time, and your freeT3 has always been very low. It's getting the dose tuned up that's the important bit.

At the moment you could easily increase T3 by 5mcg or T4 by 25mcg. It's up to you which you'd prefer to increase, there is no real right answer.

Reply
Batty1

Hey

Yeah my <.014 TSH was a direct reflection of Cymbalta once I stopped it and started on my new Combo T4/T3 you can seen my TSH raised alot from not really a huge difference in dosing from Armour to Combo... the only thing that baffles me now is my below range FT4 and super low T3 (FT3...disappeared on lab) will get to the bottom of that later.

I have chronic pain from Psoriatic Arthritis and I'm not sure if this is and issues as well.... my cholesterol levels jump pretty significant in 8 weeks... which Cholestrol issue also go in line with PSA...I'm just a hot mess.

I have no thyroid and realize that perfect has left my body 3yrs ago but geeze I want to be a little better.

I've been on my current 88mcg/15mcg cytomel before not 10 still low numbers.

Reply
vocalEK
vocalEK
in reply to Batty1

You might be right about the Cymbalta: "But more subtle effects, such as restless legs, muscle twitches or spasms, or leg jerks may be experienced by a larger number of people. Some notice these effects after they have been on Cymbalta for a while, whereas others report these effects on discontinuation," drugs.com/slideshow/cymbalt...

Reply
Teresamarie

Hi Batty1, sorry to hear you are feeling so poorly. I too have very high cholesterol along with a bunch of other troubles. After two strokes in 2017 I was put on a blood thinner (Plavix) as well as a cholesterol lowering drug (Crestor) to help with lowering the possibility of another stroke (neurologist order). Any way the only reason I bring this up is to be sure to address this side of a possible issue. I was 57 when they happened.

Since then I’ve been diagnosed with secondary hypothyroidism (2018) and am still working on a dose of synthroid that works for me. I’m feeling better because of all the help I’ve found on this site. GG seems to have a good plan of attack. The name of the game is sloooow. Good luck to you! xxxx. Teresa

Reply
Batty1
Batty1
in reply to Teresamarie

Oh lord 2 strokes, this scares me.

Reply
Teresamarie
Teresamarie
in reply to Batty1

Batty1, we have multiple things in common so I can see the level of awareness you are at. I’m frightened this could happen again but it is out of my control other than to seek medical help to be sure you are covered. My prayers are with you on you journey. xxxx. Teresa

1 like
Reply
shaws
shawsAdministrator

All doctors appear to think that a 'higher cholesterol level' means that we don't eat well and thus cholesterol level is high.

They are unaware that it is one of the many clinical symptoms of hypothyroidism and as our dose of hormones are increased cholesterol level should slowly reduce.

thyroiduk.org.uk/tuk/about_...

1 like
Reply
Batty1
Batty1
in reply to shaws

Hi shaw

Believe it or not he did say my cholesterol levels could be from my thyroid levels this is why he retested my cholesterol 8weeks after the first cholesterol...honestly my cholesterol has increased in 8 weeks...activity hasn't done a darn thing to reduce them.

When your fat the whole darn world thinks you eat all day long...I'm lucky to feel like eating at all due to severe slowdown of my digestion.

1 like
Reply
shaws
shawsAdministrator
in reply to Batty1

The commonest query on this forum is 'unexplained weight gain'. This is usual if not on an optimum dose or on a replacement that doesn't suit your body.

Optimum means we feel well with no symptoms.

stopthethyroidmadness.com/h...

1 like
Reply
Batty1
Batty1
in reply to shaws

I never lost any weight on Armour thyroid or combo but I've haven't up until the last couple of months been very active...my Psoriatic arthritis made sure of that but most of my weight gain happened during the first year and half when my pains were so bad.

Reply
shaws
shawsAdministrator
in reply to Batty1

I'm sorry you were so ill and in pain. It isn't surprising that weight was gained. Have you had your Free T3 and Free T4 testd? Both should be towards the upper part of the range.

Reply
Batty1
Batty1
in reply to shaws

It's hard to work towards getting yourself to what you believe is a healthy or optimum range for yourself when your Endos never look at the big picture of my health ..like Psoriatic Arthritis its treatments and how they could be interfering and my high inflammation markers ...honestly this disease is seriously going to kill me if these Endo dont learn to deal with other health issues and medications that can mess with their precious thyroid lab tests....Cymbalta caused my very low TSH because now its hoovering around 1.5 and the change in meds wasn't a significant difference....I've been on less thyroid meds then 88mcg/10mcg cytomel and my TSH and all my other numbers scraped the bottom of the lab reference range...I do my test fasting , take no meds and at the same time in AM....I wonder if my TSH is actually higher then 1.5 or it will tank again.

What I don't understand is how after 3yrs of being crippled by pain that suddenly the change in meds my pains reduced significantly.

Reply
shaws
shawsAdministrator
in reply to Batty1

Sometimes it could be a change of fillers/binders the pharma company use.

1 like
Reply
Teresamarie
Teresamarie
in reply to Batty1

I’m in that same boat. I rarely feel like eating and eat very healthy food but it doesn’t seem to matter. Best I can say is to look at all angles and get medical help. I don’t want to scare anyone, I just want to keep awareness out there. Be kind to yourself is my advice. Knowledge always makes us stronger!

Reply
vocalEK
vocalEK
in reply to shaws

My cholesterol came down quite a bit after I began taking Cytomel.

Total from 230 to 192 (<=200 mg/dL), HDL from 58 up to 65 (>=40 mg/dL), LDL from 150 to 109 (<=100 mg/dL), and triglycerides from 112 to 90 (<=150 mg/dL).

My LDL is still a little above target, but all the other numbers are so good I'm not worried at all.

Reply
humanbean

This post is just a fantasy version of treating hypothyroidism ...

If you didn't involve doctors in thyroid treatment for hypothyroidism life would be so much simpler.

Ignore the TSH - pretend you don't know it.

Optimise your Free T4 and Free T3 so that you feel well.

Then find out what your TSH is when you have optimal Free T4 and Free T3 for you. And whatever that TSH is is what you need for good health. If it is under range, within range, or over the range is irrelevant.

2 likes
Reply

You may also like...