AM I or aren't I HAVE I or haven't I SHOULD I or shouldn't I

Hi All

I want to ask what you would do;

The doc perscribed me a trial dose of levothyroxine (25mg for 28 days) on the understanding that she didn't think it was thyroid related (she was suggesting PMR) and that if I were to

feel better on it it would only be due to the kick it gives you, also that it would take over any t4 that I was producing Now I am doubting myself and swinging wildly back and forth

thinking may be it is PMR, candida, menopause, adrenals, a virus, or just lack of vitamins or minerals, or perhaps its all in my head after all.

AM I diagnosed or not ?

HAVE I got a thyroid issue ?

SHOULD I take the medication ?

Symptoms:

Feeling hungover in the a.m. (had no alchohol for approx 1 year)

Feel the cold, I'm always in at least 4 layers and hat with heating on, 22c body temp 36c or lower.

Fatigued, have to recover for rest of day after any little chore

A (clear phlem) chronic cough in a.m.

Feeling weak and delicate

Its all too much attitude

Moving like I'm 100 years old; slow setting cement in body.

Ache all over

Chronic sore throat

Swollen tongue (and body)

Ulcers on the back of tongue

Can't stand for any length of time, without aching back hips and legs (had to give up work)

Bad short term memory

Plantar Fasciitis and sore feet, sometimes pins and needles in big toes

I use to wake up with dead hands and have to shake them back into life

Latest = pains in chest/back/boobs

Latest Results:

(TSH 4.2 range 0.35-4.5)

Vit B12 = 343 ng/L (Please see my next question)

Vitamin D = (Still not tested even though doc asked) Taking spray 1000iug am and pm)

Ferritin = 58 ug/L

Folate = 11.5 ug/L

Iron = 15 umol/L

Calcium = 2.32 mmol/L

ESR = 22mm/h

Sodium = 145 mmol/L

Potassium = 4.6 mmol/L

Creatinine = 89 umol/ L

GFR calc abrev MDRD = 60ml/min/1.73m*2

Glucose = 4.7

Cholesterol = LDL=2.56 total=7.72 ratio=3

Both sisters are Hypo

Any thoughts or advice please

Many thanks

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30 Replies

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  • No-one can possibly advise someone what to take as regards medication.

    The fact that the GP has given you 25mcg of T4 to try for one month shows that he is taking symptoms into consideration (which is a good thing). You do sound very symptomatic and 25mcg is a very small dose and it is a hormone. The fact too your TSH is rising and in the USA you would have been prescribed with a TSH of 3.

  • Thanks Shaws,

    I was wondering what you/others would do if it were them, and then make up my own mind, Sorry if I wasnt clear :-)

  • Hi Shaws,

    can I ask if you have any thoughts on if I can class this as being diagnosed, considering the circumstances that i was give the perscription ?

    Many thanks

  • I agree with Redapple's reply if I was having so many symptoms. Good luck.

  • Thank you x

  • It would be really helpful to post the ranges with these results (the numbers in brackets) as every lab has different ranges. This way people can answer you accurately.

    Moggie x

  • Thanks for the advice, I will get around to that, will take me a bit of time (Feeling a bit worn out and fuzzy already)

  • Know that feeling well.

    Moggie x

  • The very title you have used for this post:

    AM I or arent I HAVE I or havent I SHOULD I or shouldnt I

    may well be indicative that you ARE hypo. Inability to make decisions is a definite hypo symptom in my experience!

    Add that to your long list of other very typical hypo symptoms, and a TSH at the top end of the range, and I would say YES, take the levothyroxine. You won't know if you don't try it.

    The only caution I would offer is that 25mcg for 28 days may not be enough for you to feel a significant difference, and just occasionally, someone actually feel worse when first starting treatment. So if that happens to you, do not assume it means you shouldn't be on thyroid medication.

    Ideally you would also have at least an FT4 test result alongside the TSH, but I assume this was not done and your doc has offered the trial based on TSH alone.

    Just my 'un-medically-qualified' but very 'expert-patient-qualified' opinion of course :)

  • Thank you for your 'un-medically-qualified' reply, Im definitley,( or not :-) ) indicisive I'm so happy that this site with all you wonderful people to give opinions is here as I would have been going out of my mind by now.

    Many thanks

  • As this is a trial I'm not sure this would count as a diagnosis would it? And as is often the case any imporvements are put down to either the placebo effect (you thought you would get better so you did) or down to the fact that we may like the buzz we get from a shot of T4 perhaps.

    After all it is used in the sports industry (illegally I'm sure to improve concentration and performance).

    It also seems that the menopause can bring about thyroid issues as the drop in oestrogen has a knock on effect in the production and processing of usual thyroid hormones too. That's why we are so often told that it is the menopause that is causing the symptoms.

    They may well be part of the picture and if we can't or won't take HRT (as myself) then we are left to suffer the consequences. Personally if it is provoked by drops in oestrogen the question is when these levels settle after menopause do all of our symptoms go away?

    If I was told - just hang on for a couple more years (after all it's only been 7 so far) and all this will sort itself out in its own time I would have a little more faith and push on regardless.

    It's the not having a clear explanation that is the fly in the ointment.

    Having said all that, your TSH is high regardless and a ft4 (possibly ft3) and anti body result might give you some more indications as to what's really going on.

    If it were me I'd probably try the meds and see what happens but that's just my personal opinion and you must make your own mind up in the end. As it is that is exactly what I'm trying to get my GP to do - to just try me out and see if my symptoms go away so that I can feel more like my old self.

    In the meantime. follow all the guidelines of getting enough rest, de-stress where you can, eat well cutting back on any forms of sugar, avoid alcohol and smoking (both diffiuclt for some), ensure you are getting enough Vit B's and C and D3, support your adrenals with selenium etc and if you are still feeling rotten then it is more likely that thyroid issues are the underlying cause.

    It is often only by ensuring that we have optimum levels of everything else that it can then point to thyroid as an ongoing factor.

    Let us know how you go on.

  • Thank Tulula59

    I didnt have any idea about the sports industry thing, my doc obviously did.

    Yes I am pre/post meno. not sure which, never been advised about these things. I am loath to take HRT as I beleive there is a concern about heart issues with it and as my cholesterol is very high (shot up within 2 years) I don't want to risk it. You'r very tolerant to have suffered for 7 years, I have only had the bad symptoms for less than 6 months and dont want to suffer anymore want to get back to living my life.

    I do feel that the meno triggered thyroid issues as my mum never suffered these extreem symptoms with hers. I cant "pinch an inch" on my body Myxedema? which I don't beleive is a symptom of meno.

    Thankyou for your lovely theories/explanations which I do agree with and the advice.

    FF x

  • you are vitamin B12 deficient, no doubt about that!

    your levels are in the bottom of 'normal range', anyone under 400 is most likely deficient, but with symptoms there is no doubt!

    here is from your list those symptoms which are attributable to low b12:

    Symptoms:

    Feeling hungover in the a.m. (had no alchohol for approx 1 year)

    Fatigued, have to recover for rest of day after any little chore

    A (clear phlem) chronic cough in a.m.

    Feeling weak and delicate

    Its all too much attitude

    Moving like I'm 100 years old; slow setting cement in body.

    Ache all over

    Chronic sore throat

    Swollen tongue (and body)

    Ulcers on the back of tongue

    Can't stand for any length of time, without aching back hips and legs (had to give up work)

    Bad short term memory

    Plantar Fasciitis and sore feet, sometimes pins and needles in big toes

    I use to wake up with dead hands and have to shake them back into life

    Latest = pains in chest/back/boobs

    the pins and needles are VERY much b12, it's a neurological symptom.

    your GP will most likely not give you injections but you can 'fight' as injections is the best/quickest way to restore your deprived tissues of low b12, you could then trial sublingual b12 after your boost with injections to see if they 'hold you up'

    find more information here:

    b12awareness.org/

    b12d.org/

    b12d.org/diagnosing-and-tre...

  • Hi NBD

    Not sure I have the energy to fight, Usually go in and can't string a sentence together let alone think/remember what I need to say, But I will try otherwise will perservere with tabs many thanks for the info and links.

  • Always take notes with you, to either give your doc, or to prompt you!

  • Good tip, will do

    xx

  • Hi Flatfeet,

    I'm not medically qualified but I have to say you sound very Hypo to me. The swollen tongue according to the thyroid doctor I see means you have been chronically hypothyroid. I have an enlarged tongue, my doc said he thinks I've been hypo for 20 years. If it's in your family doesn't this indicate you are more likely to be hypo? My mum and Gran were, now my eldest daughter has just been disgnosed at the same age my problems started, 35.

    I know you have to start a dose somewhere, but 25mcg is an infant's dose. You are not likely to do much on that.

  • Hi Helcaster,

    I dont understand that if I have been chronically Hypo why my TSH is not that high, also my sister was diagnosed with Hypo at "10" and didnt feel unwell just tearful depressed. No wonder docs have hard time.

    I hope to feel at least somewhat better on this dose so it can be adjusted (thats if the doc doesnt tell me it prob just the kick your getting from it)

    Thanks FF

  • TSH doesn't really tell you that much, in Europe and the US with your numbers you would automatically be treated. My thyroid doctor has said this test hasn't even been validated. Some people on "low" raised TSH's feel terrible. Mine was 5 and I know I feel just awful. Your thyroid generally takes many years to slow down and not produce the hormones we need. Each birth, menopause gives it a bashing, (if you are female!).

    My doctor said a really bad bout of glandular fever I had at 19 was the probable culprit. I'm now 56! In my case there has been years of missed opportunities to be diagnosed, I only got diagnosed 2 years ago!

    I honestly don't think you are going to feel much on 25 mcg of levothyroxine. I didn't feel the slightest benefit until I got to 175mcg when my heart calmed down a little, even on 200 mcg i'm not improving.

    I really hope you are lucky with it.

  • I have heard that many things can trigger thyroid probs, mine probably the menopause. I feel for you to have suffered and been missdiagnosed for so long, this is truly a missunderstood and missdiagnosed disease.

    As someone said on this site we need clinics for this and all to be tested when well to get a real "normal" reading.

    Will let you know how I fair, thanks again.

  • HI again, At least you have the correct B12 now. When I was diagnosed with low B12 in 2002 I was prescribed 50mcg of the one beginig with C. Since coming on this forum I now have sublingual Methylcobalamin at 1000mcg. Early days but I hope it helps.

    Clinics sound like a fantastic idea, bring it on! The NHS would save money on fruitless hospital appts, tests and treatments for individual symptoms.

  • the swollen tongue is also low b12 in tissues (I never knew this until recently)

    However of course flatfeet is probably both: b12 deficient 'and' hypo

    both things should be addressed, fixing the hypo will not fix the chronic low b12 and neurological symptoms will slowly worsen if not addressed.

  • Absolutely spot on NBD :)

  • I shall duck the question and quote some lyrics that leapt into my mind when I read your question:

    Is you is, or is you ain't my baby

    Maybe baby's found somebody new

    Or is my baby still my baby true

    (Lyrics by Jordan and Billy Austin.)

    But you have had some good replies here and on your B12 question.

    Rod

  • Remember it well :-)

  • If you are swinging back and forth, dosent that suggest Hashimotos D,I was given trial of 25mcg thyroxine for 10 weeks, it did nothing except my blood test showed me to be hyperthyroid.

    I was told to stop the medication, I have discovered that ( for me) taking thyroxine with hashi wont help, I would probably have a honey moon period then feel ill again, because the underlying issues hasnt been dealt with, therfore in my instance the trial was a pointless task.

    Im not saying for one minute that this will be the case for you, but give them a go. The other issue I had, although my TSH is normal ( not) my antibodies are the cause, not my thyroid, but eventually I will become hypothyroid, thats if I am not already.

    merissa x hope this makes sence.

  • Hi Merissa

    I meant that I was swinging back and forth with my thoughts, not symptoms, sorry for the confusion.

    Thanks for the advice though :-)

  • ....I agree with merissa. I have Hashimotos and was reading through the thread waiting for the mention of Anti-Bodies. It would be good to have them tested as it is after all the most common form of thyroid illness - Auto-immune Thyroiditis.

    I have read that often people with anti-body problems do not always do well on T4. I took it for 6 years and the FT3 continued to be at the bottom of the range in blood tests. Could have been the low B12 and VitD preventing efficient conversion though.

    I found the 25mcg difficult to tolerate in the beginning which was probably due to having been underactive for so many years. Eventually raised to 50mcg. Now on just T3. With Hashimotos I feel that Fibro and lots of other auto-immune issues creep in pulling you down.

    I was once diagnosed with PMR some 12 years ago. This was the GP. A Rheumatologist downgraded it to Fibromyalgia....now a million times improved thanks to things learned on this site. I was diagnosed in 2005 at 59 - so many years struggling. Now feel better than I did in my 40's !!

    So much good advice for you to follow from the ones above - so please keep posting so we can follow your progress ! Good Luck.

  • Hi Marz,

    As I replied to Merissa; I meant that I was swinging back and forth with my thoughts, not symptoms, sorry for the confusion.

    I'm sorry that you have been around the houses to get to where you are, I may need this advice furthur down the road, Its being such a sharp learning curve.

    Have taken first Levo tab will let you know how it goes.

    Many Thanks for the advice :-)

  • lol sorry, I probably read your post wrong, yes good idea to take levo after all you will never no if you dont try.

    good luck though x

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