Can someone help with test results.: Been on levo... - Thyroid UK

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Can someone help with test results.

islandgirl1986 profile image
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Been on levo 50mcg for about 7 years after seeing endo privately, waking gasping for air and tachycardia. Normal bloods but high antibodies and tsh rising over time. Peroxidase and another antibody became positive over a year. About one and half years into meno and gp now recognises I am hypo. Tried to increase dose but too scared as have terrible palpitations ( had these before ever starting levo). Have been on benzos and developed tolerance,just to complicate things. Constant anxiety, sleep problems, tiredness,palpitations and losing eyebrows, and only thing for sure is that it's worse since meno. GP wouldn't repeat tests or do any new ones as last done in October 13. Hospital will not do T3. Other conditions hypocalcemia and secondary hyperparathyroidism, low vit D, taking supplements,vitiligo, low end B12 ,just started three monthly injections. Had anemia, last treated about 2 years ago. Hope not too much info, theres more! Can't get blood tests done priveately here in Cardiff or it seems anywhere in Wales without docs consent. No chance! Had lots of adrenal profiles done over years with low cortisol, high cortisol, and always elevated DHEA? Sorry so long. October 2013 blood test results: Serum Folate 8.8ug/l (3.1 - 20.0). Serum Vit B12 291ng/L (130 - 900). Free T4 16 pmol/L. TSH 2.85 mU/L. Serum hydroxyvitamin D3 level serum 51.1ug/L. Plasma hydroxyvitamin D3 level 51.1 ug/L. Thankyou for any input.

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islandgirl1986
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shaws profile image
shawsAdministrator

Sorry you are so unwell. First things first. Many GP's prescribe levo and then appear to medicate the patient due only to the TSH result and, if within, range believe that's the perfect dose of meds for the patient.

Most hypo people would feel quite ill with your high TSH. Dr Toft of the BTA states that - excerpt from article in Pulse Online:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

****

In the USA people would be treated with levo with a TSH of 3, instead in the UK they say treat when you reach 10. Many GP's wait and ignore clinical symptoms but some, thankfully, treat when you reach about 5. In the meantime the patient suffers and has more clinical symptoms.

If you'd like a copy of Dr Toft's article to give to your GP (I would send it to him to digest before your next appointment) email louise.warvill@thyroiduk.org.

You can get private blood tests done and some can be done at home. I believe Blue Horizon do home blood tests but you'd have to look at their site. Usually you get a discount at these labs if you quote TUK (Thyroiduk.org):-

thyroiduk.org.uk/tuk/testin...

Others will comment on the rest of your blood tests, although I see your Vit D, Vit B12 are very low.

I had tachycardia before diagnosis and afterwards they were worse on levo. Many get well if they have been given enough medication, which you appear not to have. Also if we have one auto-immune condition we are apt to get others, which you have also.

Don't take your medication before your blood tests (meds should be taken first thing with a full glass of water and breakfast about 1 hour later). Always have your blood test as early as possible, and take meds afterwards as it skews the results.

Always get copies of your blood tests for your own records, complete with the ranges, as labs differ throughout the country.

islandgirl1986 profile image
islandgirl1986 in reply to shaws

Thanks. I have done a lot of reading over the years, and I probably made the mistake of not increasing the dose 7 years ago, as suggested by the endo at the time. I have tried, but have become too aware of palpitations and have also read that the adrenals should be addressed first ( I am doing a salivary test today ). Worked with a nutritionist for quite a while then gave up even though she was able to help getting adrenals more stable. But, tests so expensive, and I was foolish to think I was getting better.I think I will have to go back to basics,diet etc and I also noticed post in which Izabella Wentz site was given as an approach to Hashimotos on here today. I was seen by endos in Cardiff about 5 years ago. They did some tests, but didn't agree I needed the levo I was taking as I was 'in range'. I asked for trial of T3 but was refused. I was told I wouldn't need to come back! Just out of interest a blood serum morning cortisol test was done by private endo, and he commented 'OK' in letter to gp. Any thoughts. Will email TUK for article and have left voicemail for Blue Horizon. My gp has just retired and new one coming in from London. May have some different views. Very frustrating here in Wales as can't obtain blood tests without referral, and no alternative but to travel. Thankyou again. Just one other quetion, if you want to private message someone how do you do that?

shaws profile image
shawsAdministrator in reply to islandgirl1986

To go private, you try to find the name of a good doctor. Some need a referral from your GP, others don't. You can email louise.warvill@thyroiduk.org and she may have one in your area. You may have to travel but sometimes its worth it.

Go to the date November 28, 2003 to read answer to question:

web.archive.org/web/2010103...

shaws profile image
shawsAdministrator

I think sometimes, too, it maybe fillers/binders in meds because when I went onto T3 alone the palps stopped, neither did I get palps on NDT.

islandgirl1986 profile image
islandgirl1986

Yes,you could well be right. Hopefully my new gp will be more up to date on thyroid. I also tried NDT and T3 went right up,but I didn't feel better and gave up. Do you have any ideas why that happens.

shaws profile image
shawsAdministrator

I had to try a few levothyroxines and several NDT's before I found an NDT that suited me. T3 I also found good. Sometimes we are deficient in some vitamins/minerals too but if your thyroid hormones are too low a dose, you will not get better. Breathlessness is another clinical symptom which should be solved as soon as possible.

islandgirl1986 profile image
islandgirl1986 in reply to shaws

Sorry. i'm on the ceiling with anxiety again this morning. Not slept well and shaking/palps with anxiety. Didn't take any levo y'day and felt high anxiety in the morning which passed by 11am, albeit i have to take benzos. I understand what you are saying, but i am afraid to go up dose with pounding heart. Can you recommend anyone privately who may be able to help. Is there anyone practising the way Dr Lowe does. I will contact Louise today.Thankyou for your help.

puncturedbicycle profile image
puncturedbicycle in reply to islandgirl1986

Hi. Sorry, why did you skip your dose of levo? I get palps and crazy shaking anxiety when I reduce levo. It could be that you need more rather than less, but with palps you need to know what's going on. Are you supplementing to get your levels up where they need to be for your body to use your meds?

Also have you spoken to a support group about your benzos and finding an alternative?

I hope you can work on this and get somewhere because that generalised anxiety is a real pain in the a**e. You have all my sympathy. x

islandgirl1986 profile image
islandgirl1986

Hello. I didn't take it because I did the adrenal salivary test, which in the past showed low levels,high levels cortisol (always abnormal ) and always high DHEA, but they never give you a reason for high DHEA. I didn't have the chronic anxiety after 11am y'day, so I mistakenly thought maybe I should leave levo alone and see what happens.

I'm aware that the benzos could now be causing the very symptoms that they appeared to relieve at the beginning ie tachycardia, waking feeling I couldn't breathe ( have always woken with shock shortly after going off to sleep, but just made comment to hubby that I thought I had stopped breathing and then went back to sleep ). Unfortunately, 9 years ago that didn't happen and I ended up in hospital with initial diagnosis of virus, then sent home feeling just as bad diagnosis, Anxiety! Had high antibodies, but 'normal' TSH, T3, T4 . Found MRI abnormality of brain, which commented no action needed. I must admit if I went in frightened,I came out even worse. I went to see private consultants inc endo and hesuggested I tried dose of up to 75mcg, but because of palps I became scared and dropped to 25mcg. no logic there as I was already having them. I certainly don't fit what most of the people say are their main problems, I'm so hyped and unable to sleep. This has become much worse since meno, when they finally conceded I was hypothyroid. Tries Estrogel,low amount and stopped this 3 weeks ago as it only seemed to help with flushes, and I didn't want to complicate matters further, by adding in more hormones. From what I have read over years, my adrenals are a problem and those have to be treated first of treatment with levo looks as tho u are hypo. The other poss is that I am swinging back and forth between hypo and hyper, tho never had a test in the last 9 years that said over. I'm so confused. I have list of private docs and living in Cardiff, I will travel to wherever anyone offers hope. I've exhausted mental health and can't tolerate antidepressants. Any thoughts.

puncturedbicycle profile image
puncturedbicycle in reply to islandgirl1986

As shaws said, your tsh is quite high for someone on treatment. Have you got the ranges for your results? I had palps and dreadful anxiety when undertreated and at times when I tried to reduce levo.

When you talk about palps, is that irregular heartbeat or fast or hard? What's your resting pulse and temp?

Sorry for the intrusive question, but what are your guts like? Overactive or underactive?

islandgirl1986 profile image
islandgirl1986 in reply to puncturedbicycle

These are from October 2013. Serum folate 8.8. Vit B12 291. T4 16pmol/L TSH 2.85 Vit D3 51.1. Had tachycardia as presenting symptom before I ever started levo. Have been on 50mcg for last 5 years, then meno kicked in and told to up dose to 75mcg, but too scared cos palps. I just haven't had the guts rto confront head on, as they always told me it can't be thyroid. After 9 years i'm a mess and a lot of symptoms just don't seem to fit as norm. Always had overactive gut (loose bowels and feeling weak) and doc always testing urine for infections, which normally neg, This week pain in left kidney area and under ribs. Anxiety awful. It's almost as if I'm swinging from hyper to hypo. in meno so get a couple of irregular heartbeats, mostly just fast,but bp normal/low around 110 over 60 and pulse only ever up to 91. Thanks again.

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