I have a 2 generation family history of underactive thyroid. The last 6-9 months I've had quite a few symptoms and it's not getting any better. The weightgain and unable to loose, weakness, dizziness, confusion, tiredness and shortness of breath are the reasons I went to my GP. Bloods were done and my TSH was 5 (apparently within normal range) and GP diagnosed Costochondritis for shortness of breath and take paracetamol . I just don't know what to do next? I really don't feel my usual self and I know there's something not quite right. I'm a personal trainer and shouldn't be this out of breath, tired and feeling weak. Your thoughts/opinions would be greatly appreciated x
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Chazza_V
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Did you just have the one test? Have you not repeated it since? Because 5 may be in-range, but the ranges are stupid. 5 is too high to feel well.
But, the TSH on it's own, doesn't tell you much. And the NHS refuses to do the right tests. So, my advice to you would be to get our own tests done privately. What you want are :
TSH
FT4
FT3
TPOab
TgAB
vit D
Vit B12
folate
ferritin
That will give you a really good idea of what's going on with you. And, what you can do to help yourself.
When you have the test, have it early in the morning, and fast over-night.
Details of private tests can be found on the main page of ThyroidUK.
I agree with you, your symptoms do sound like low thyroid.
He requested tests for liver, kidney and thyroid- all normal. I've been tested before but 'in range'. As times goes on i'm noticing more symptoms, sore throat that feels but doesn't look swollen, my voice randomly goes hoarse and I cant concentrate, poor concentration, change in appetite and taste of food, tearful, aching hips, knees, pelvis and back, i Feel like a walking disaster!
No, but I mean the TSH. It is important to know if the TSH is consistently high, or if this is a one-off. And, never take normal for an answer. There's no such thing. 'Normal' is an opinion, not a results. And just being 'in-range' is not the same as 'optimal'. You need to know the exact numbers, not just your doctor's opinion. Because he could be wrong!
So, you really do need to get those private tests done and then you will know just how much of a disaster you really are! lol (Just kidding, but it is important to have the right tests done.)
Thank you. I'm going to request a copy of my results and get things sorted, I can't carry on like this, it's starting to affect my work and home life. Thank you so much for your advise!
The TSH is meaningless when they ignore clinical symptoms (which they don't know in the first place and also are unaware how disabling they are).
Unfortunately, this is the 'modern' way to test patients.
Before these blood tests were introduced, along with levothyroxine, we were given a trial of thyroid hormones called Natural Dessicated Thyroid Hormones (made from a pigs or cows thyroid gland) due to our symptoms.
Nowadays they only prescribe levothyroxine which was introduced along with the 'blood tests' which were supposed to be perfect. The major problem is that it has left thousands unwell through being undiagnosed and some must be disabled with their awful symptoms.
Patients are diagnosed as having everything else under the sun except a problem with their thyroid gland. I'm one of them. Never did have a test until a week before diagnosis when I demanded a blood test form from the surgery one week after being discharged after an overnight stay in the A&E cardiac dept as 'probably viral with high cholesterol. High cholesterol being one of the 300+ clinical symptoms..
In my expirience, some doctors never send the actual lab papers back to you. instead they scribble some of the results on paper and mail it to you. If you insist they send a copy of the first page or so to you. By this point several weeks may have passed. sorry to be pessimistic, but that has been my experience...
In that case, you have to take further measures. There are such things as access orders. Post a question on here and people will tell you exactly how to get all or your results from the endo.
Yep, try the Thyroid Plus 11 check at Blue Horizon Medicals. You can do the finger prick test at home, just make sure you are properly hydrated and do it first thing in the morning.
I am very sorry you are having awful symptoms. Did you have a blood test at the very earliest and fasting?
If you can get a print-out of the results from the surgery with the ranges and post them. The ranges are important and labs differ due to having different machines and it makes it easier to comment.
If you didn't have the test early a.m. you can get a private blood test from a recommended lab. I'll give you a link just in case and you can ask a new question about it from those who've used the service.
In some countries a TSH of 3+ would be a diagnosis of hypo. In the UK it is 10 and it is disgraceful that symptoms are ignored by doctors (no knowledge of them in the first place).
Doctors have been told that TSH is the definitive way to diagnose (which we, the patients on this forum do NOT). The most important tests (which they rarely do) is Free T4 and Free T3 and thyroid antibodies. T3 is the active hormone which drives our whole metabolism and with hypothyroidism it is usually low.
If GP hasn't tested your Vitamin D, Vit B12, iron, ferritin and folate ask for these to be done. We can have deficiencies which also give clinical symptoms.
I was not told to fast by anyone (GP or reception) and the appt was at 11:20am. When I called the results line she only mentioned liver, kidney and thyroid was tested and they only took 2 samples from me. I told my GP all my symptoms and family history of hypo and he said it wasn't thyroid as I didn't have the 'physical appearance' of someone with thyroid!
They are unaware about fasting or it seems anything else. They are also unaware that the TSH is highest early a.m. and drops throughout the day. So if you have a blood test about 5 p.m. it will be lower than in the morning. Also when you are taking hormones they mistakenly adjust the hormones if they think the TSH is too low' to try and .'fit'.
He is so stupid your doctor. Not everyone is bloated or have weight gain. Even if someone is they will not diagnose if the TSH is 'normal' range.
You will have to read and learn and ask questions but the most important thing at present is to be diagnosed.
We have found out by trial and error the best way/time etc to have a test.
Thank you so much for your advise! I did guess it would be a DIY job in terms of info and understanding from GP. I'm on antidepressants, have been for years but not on any meds for thyroid. I'll keep you posted how I get on Xxx
As suggested below, I'd get a private test if you can afford it. He has given you anti-d's when in fact you could probably have been hypo in the first place.
I've been on anti-ds since the age if 15, which strangely enough goes back 3 generations too. I've read there is a link between the 2. My depression has never been something caused by life, it's a chemical imbalance so I do feel the hypo could have been surfacing itself many years ago.
Jt is very possible that you have had a low Free T3 since 15, which nobody thought of testing. T3 is the only active hormone in our body and we have to have sufficient for our body to work normally. The brain contains the most T3 receptor cells and I believed followed by the heart. (some psychiatrists prescribe T3 for their patients).
Even now, if you have hypothyroidism it will only have been finally diagnosed when the TSH reaches 10 (some doctors are kinder and will prescribe when it's slightly over the range)
Important to get all the tests listed by grey goose, for example low B12 can cause a hoarse voice.
Also, have you investigated food sensitivities? I realise everyone is different but my daughter's depression lifted when she cut out grains, dairy, sugar and nuts, which seemed to reduce inflammation.
Blue Horizon - Thyroid plus eleven tests all these.
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
This test includes checking thyroid antibodies. There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.
NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.
If you have high antibodies then it should be considerably easier to persuade a GP to treat you - especially as you have family history
(but may still not be recognised by your current GP.....seems very blinkered )
HI Slow Dragon I take my levo at night as I was told by the endo absorption is 30% better, do you think this is true ? Also if you have to not take it for 24 hours before when should you take it if blood test is in the morning
I certainly found it much better switching to taking at bedtime (also recommended by my very senior endo)
On a day I am doing blood test ( I use Blue Horizon home tests) I don't take Levo night before. I take it immediately after blood test and then wait an hour before cup of tea/breakfast. (Again my endo was most insistent that should not take Levo in 24hours before test)
Other thing that helped that I started just before switching to night time dosing, was adding slow release vitamin c with zinc (I use Redoxon) . I think it helps adrenals.
Lots more on my profile about other vitamins & gluten.
Long research article - final conclusion paragraph below
"In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in QOL to occur."
Thanks Slow Dragon...very helpful...can I just ask if you take it after blood test can you then take it again that night...I have a blood test booked for 11am
Yes, it's a storage hormone, so it's not a problem.
Apparently if GP's suspect that a patient is not taking their Levo regularly, they can get them to come in & take a full weeks dose in the surgery all in one go!
Not a good day today, very lathargic, drowsy, achy, shortness of breath and tried doing housework yesterday and had to stop after 10mins, had a funny turn. This is so silly as I'm 32, a personal trainer, usually very physically fit (although have had unusual high pulse rate in low cardio for some time, GP diagnosed extra heart beat or ectopic beat) and shouldn't be like this fitness wise! I asked to book in with my GP on Friday when I had my results, first avaliable appt 7th Nov!
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