Hi all, I've recently been diagnosed with hypothyroidism, went to my gp with what I thought were menopause symptoms I've had for the last 6/12 months, my tests came back Tsh 80, which they repeated two days later, then Tsh was 118 t4 5.3 t3 3.2
My confusion is, the doc was ringing me every day asking, can you focus, are you dizzy, can you think straight, are you lucid!, then tells me I could go into a coma, really panicking, they started me on 50 mc of lvx they were really concerned, I will have more tests in few months, the thing is I feel a fraud, I've been v v tired, gained a bit of weight, got some odd aches and pains and feeling of lump in my throat, but nothing really unmanageable, could there be another reason my tests are so high, any advice would be helpful. Could it mean another condition my GP may not be aware of?
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Well, if we had ranges for the T4 and T3, and knew if they were Free T4 and Free T3 we could interpret them. But the TSH at 118 tells us that you are very definitely hypothyroid - you have primary hypothyrodism.
You are lucky to have a doctor who cares enough to ring and ask you how you are, and yes you could have gone into myxodema coma but I think your TSH would probably be higher and your Free T4 lower than that. I'm tempted to say you don't live in the UK because I just don't think many doctors are that caring now.
It was correct to start you on 50mcg Levo but you should be retested 6 weeks after starting, an increase of 25mcg, another test 6 weeks later, another 25mcg increase, and repeat until your levels are where they need to be for you to feel well.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed) . This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.
For best absorption, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
It would be a good idea to ask your GP to test your thyroid antibodies. Autoimmune thyroid disease (Hashimoto's) causes about 80% of hypothyroidism. Antibodies attack and gradually destroy the thyroid. If you do have raised antibodies confirming Hashi's then your symptoms and test results will fluctuate as and when the antibodies fluctuate. People with Hashi's generally benefit from a gluten free diet, supplementing with selenium and keeping TSH suppressed, this can all help reduce antibodies.
It would also be a good idea to ask for vitamins and minerals to be tested, these need to be optimal for thyroid hormone to work, and if you do have Hashi's then it often causes deficiencies or low levels:
Thank you so much, I am in the Uk but tbh I think my gp was worried that they had missed something because I had tests 4/5 years ago that she said we’re at the high end. And they basically said I was peri menopausal, I don’t go very often so didn’t go back until I lost my libido had loads of odd pains but if constipation and had bouts of overwhelming tiredness, my daughter says I’m sometimes a bit silly, so all makes sense. They didn’t do antibody tests, it was more a complete overhaul blood tests and ovarian cancer coz of the pains I’ve been having, my white blood count was low 3.6 but thy haven’t mentioned that. My brother has Addison’s so autoimmune issues are in my family.
I will ask my gp to do the other tests and if they won’t will find somewhere privately.
Should I take the supplements anyway or get tested first?
You need testing first to get your levels, then if they need supplementing you'll need to get the correct dose. When you have the results, put them on the forum and include the reference ranges, and for Vit D and B12 add the unit of measurement, eg nmol/pmol/ng/L/pg/nl
Thank you that’s really kind of you, much appreciated, I’m trying to get an appointment with endocrinologist too. So will try to get it all done at the same time
The more experienced members will be along shortly.
My opinion is your GP should of started you on Levothyroxine when your TSH was 80, not waited two days later for further thyroid results. Do you have your lab ranges?
Once your TSH reaches 10 the NHS recognises you have thyroid issues and then starts you on treatment.
To be messing you about when your TSH was 80 is beyond me and irresponsible.
I see you have been started on 50 mcg of Levothyroxine, this is a starter dosage, you then need a blood test every 6 weeks testing TSH, T3 & T4 and increase your Levothyroxine by 25 mcg each time, until your TSH reaches 1 or below and your T3 & T4 is in the higher figures of the lab ranges, and most importantly you feel well.
You should not be on the same dosage for months, GP’s don’t know enough about thyroid issues, and you will soon learn that leaving it to the GP to advise may not help you at all.
I’m afraid it maybe a case of educating yourself and politely, but, firmly guiding your GP. You have come to the right place for support.
I see you have not included your lab ranges on your results, you need to include those.
You are entitled to a copy of those from your GP, don’t be fobbed off by the receptionist or GP.
Many surgeries offer access to your results on line, ask if your surgery does this.
When you have thyroid blood tests, always book them for as early as possible in the morning, before 9am.
Why? Well it’s a tip that we give people on here, and, doesn’t need to be mentioned to the GP, nurse or Endocrinologist.
Your TSH is always higher in the morning and this enables us patients to obtain a much needed increase of Levothyroxine without having to beg the GP for one.
Don’t eat, or take your Levothyroxine before the blood test and only drink water.
Have you had your antibodies tested for an autoimmune disease (Hashimoto’s)?
You mentioned the GP is going to do other blood tests, are they your vitamins?
Sometimes people with thyroid issues can get symptoms very gradually, this was me.
For years I had always felt the cold, then I started to have no energy, then my weight was creeping up, then I suffered terrible neck stiffness and muscle stiffness, then all of a sudden I became a walking emotional zombie and had all the symptoms.
I even saw a Endocrinologist who was as much use as a chocolate fire guard. I turned to this forum for help, and I’m pleased to say I am on the mend. I learnt that just because we see the professional they don’t always have the correct answers, or there hands are tied.
Thank you very much, the tips are helpful, I don’t think they did other tests for antibodies or vitamins it was more to see general stuff and ovarian cancer test, the only other one that wasn’t right was my white cells were 3.6 but they haven’t mentioned it, the copies I got from the GP read like this
Serum tsh level 118
Serum free t4 5.3
Serum free t3 3.2
They are going to repeat the same tests in3 months, I will ask for sooner and also ask for hashimoto tests, my brother has Addison’s so there maybe autoimmune issues in the family. Glad you are doing better now, I’d like to have less aches and pains so hope it improves 😩
Sounds v similar to me went with what I thought was menopause and got a slightly panicked gp call, TSH >150 and t4 3.1...can't add much as I'm new also and bewildered but all helpful here, I'm on 50mcg as a starter as well and have felt worse, on day 10 now and "think" I'm a IT perkier! Hope you feel better soon x
Hmm, not sure about efficiency - I think your doctor kept ringing you as he was afraid you'd sue after being really ill with something he obviously missed (probably for years)
One thing that should give you a bit of comfort is that on this forum we often find it is people who have extremely high levels of TSH who get better the quickest and respond really well to treatment.
The ones who don't do well are the ones who have a TSH that is high in range or a little bit over the range and it just doesn't change much - sometimes for years.
This happened to me. I was told my thyroid was "borderline underactive" in roughly 1990, and I got my first prescription for levothyroxine (very, very grudgingly) in 2013.
I just mentioned my impression that people on this forum with high TSH's often do well on standard thyroid treatment. I was trying to be supportive and optimistic. If this isn't what happened to you, then I'm sorry, but I never said it was a cast iron rule.
In what way is 'we often find' a 'made-up statistic'? When I worked as a statisticien, it was all numbers. I can't see a single number in that response, apart from the dates, so I don't understand your sharp reply.
You're baiting me and hanging onto semantics in order for me to explain myself and engage in senseless exchange of posts with you so you look like you stepped in to "protect" your HU buddy who makes baseless statements.
I'm not going to do engage, not interested, don't have time.
And I'm an analyst if that's of any relevance to your statistician work.
I'm cynic and sceptic when it comes to GPs nowadays so I'll tell you how it played out with your GP:
She fobed you off for 6 months with menopause cockamamie (could be worst and she could have fed you antidepressants instead)
Then she took tests for TSH only, it came back very high, but as it was TSH only they weren't sure what went wrong and if it was correct sample so they request 2nd test
2nd test they did all markers, confirming your pretty much dead thyroid
Then she got scared she messed you about for 6 months so she called you up to check if your not dead yet due to her lazy and incompetent doctoring.
See it as you wish, I've been there and got the t shirt
Wow! I'm interested in how your high TSH has worked out with medication hope you don't mind me asking? I've seen a few things dissing it as well, an accurate version of how it's panned out would be helpful if not hopeful!
For TSH to reach high numbers takes months or even years.
During that time the damage done to the body is irreversible.
It took me almost three years to be diagnosed with severely underactive thyroid during that time I had and expressed to doctors numerous symptoms.
The most prominent one I still 10 years after starting hormonal treatment battle.
I'm swollen inside and outside. False, legs, internally massive migraines, carpal tunnel and pins and needles in legs. I can maintain it with medication however it comes back. Call it cell memory due to damage or just irreparable damage it's done and I can't fix it.
I was diagnosed begging of August and by November same year, though bloods were showing euthyroid status I still had all hypothyroid symptoms: tired, swollen, cold, headaches, constipation and so on.
I probably caught a break about two year into the meds and only because I've been put on mix of t4 and t3.
I'm not trying to scare anybody I'm trying to correct myth a lot of doctors repeat that once you're on meds you'll be all right and other myths that those affected the most heal best and quickest. Mix it with the lack of understanding by medics and lack of interest you have long way to get to moderately "normal"
I never got normal or healthy like I used to be. I'm coping and doing my best since last 10 years but I can see damage done not repearing.
Oh dear that sounds awful for you. I'm actually a bit cross TBH I've been diagnosed with ulnar nerve damage similar to carpal but called cubital I think anyway caused very worrying symptoms as well as massively debilitating sciatica and hip pain, permanent limp and it seems to me that much of this may have been thyroid related but never once have I been offered a simple blood test. So now from your response it seems I could have irreversible damage to my body through ignorance and beligerance of gp's - oh you hardly eat or sit at peace but can't shift weight? yea right, they can manage that, yes very cross am I!
Funny, my ulnar nerve gets "trapped" as well. I pretty much have problems with all my extremities if bent completely naturally for extended period of time.
Elbow and I get numbness in my two last fingers, wrist and I get carpal tunnel and thumb and two fingers numbed.
If I sit for longer than 10 mins on a toilet my lower legs get numb, if I sit on a chair (like at work) for longer than an hour my lower legs swell.
This is all connected to the damage lack of thyroid did in months I was severely underactive. All those symptoms were there and they're still are to lesser extent but still are.
All of it to do with internal swelling no amount of thyroid meds are fixing or repairing now.
Sounds similar to me I get bizarre twitching and numbness from ulnar nerve problems and very sore arms, I had no idea all of these problems could stem from thyroid, very unsettling.
Your aches and pains may be due to your hypothyroidism (I get an annoying backache first thing in the morning sometimes which goes away when I take more Levothyroxine) but it could also be due to low Vitamin D. For some reason people with hypothyroidism don't seem to absorb nutrients from their food properly. It may be due to low stomach acid. This means that however well they eat they end up low on Vit D, B12, Ferritin, Folate and sometimes iron. All these need to be at least half way up the normal range to help you make best use of the Levothyroxine. It's definitely work getting these checked. I definitely feel better when I take B12 and D. I have stopped taking D during the summer but I will start again soon because I have an indoor job and hardly ever get to spend time outside.
It's interesting to hear about your backache, I get constant pain behind my left shoulder blade at night if I lay on my back, which is how I've always slept and had no problems before, I guess the symptoms are very varied. It's Annoying as I don't know if I should put everything down to my thyroid?
What amazes me is that you feel so (comparatively) OK on such a high TSH, with low T3 and 4. No wonder your doctor was panicking - so he/she should!
When I was first tested my TSH was just over 5.9, not very much above "Normal" (the range seems to be set too high for most of us), and I did not feel very well. Some days I had difficulty concentrating enough to speak coherently or do anything much - and got told I was "Confused" by a rather rude doctor during a telephone consultation, as I struggled to explain how I was feeling. As my T4 was lowish (T3 wasn't tested) but still within range I was classed as "Subclinical", but at least was given another blood test and put on a trial dose of Levothyroxine (25mcg to start as I'm older and have high blood pressure), increased to 50 about a month ago, and beginning to feel the need of another increase as soon as the 6 weeks are up. Let's hope my TSH is still high enough for them to agree!
It seems that everyone responds differently - different symptoms, different tolerance of the wrong levels etc.
Yes because I felt relatively functional that was why I was confused and wondered can high tsh levels be caused by anything else or mean anything other than a thyroid problem?
I suppose high TSH could be caused by a problem with the pituitary or hypothalamus. But it would still affect the thyroid. If your thyroid was OK, high TSH would put it into overdrive and you would be hyperthyroid, not hypo. So as you are hypo, it must mean you have a thyroid problem.
I was diagnosed with a TSH of 40 and T4 of 5 I thought it was the menopause I had had a TSH test a year previously which the doctor said was normal at 4.9 a year later it was 40! I had insisted on thyroid test again because of weight gain she was desperate to get hold of me once she got the results and started me on 100 of levo
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I get bizarre twitching and numbness from ulnar nerve problems and very sore arms, I had no idea all of these problems could stem from thyroid, very unsettling.
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