I just wanted to see if I could get any advice from anyone suffering Hypothyroidism. I had my thyroid checked last year as I was exhausted all the time, gaining weight and struggling to lose it. My results then were just over the normal levels so my GP did nothing and earlier this year, I was diagnosed with Chronic Fatigue Syndrome.
I went back to the Dr recently as I have continued to gain weight (3 stone in a year!) and have yet again been booked in for a blood test. I decided to do some investigating of my own so booked a Thyroid Plus blood test through Medichecks and the results have just come in.
My TSH is 7.35 (high) and my thyroglobulin is 116 (high).
I'm hoping now that my GP will take this seriously and give me some medication. I was curious to know if anyone else had to put up a fight to get this condition treated? With regards to my results, can anyone advise if they are in the right range to receive treatment for?
Many thanks in advance!
NB x
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NeensB
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Most on this forum are hypothyroid - some have been/are hyperthyroid.
Your TSH is over range but if in the UK doctors are directed to only prescribe when it reaches TSH 10. In other countries people are diagnosed as hypo when TSH is 3+ with symptoms.
The fact that you have antibodies you have an Autoimmune Thyriod Disease called Hashimoto's. Treatment is the same as for hypothyroidism.
When you give results, you also have to put the ranges as it makes it easier to comment. Ranges are in brackets after the results.
Tick off your symptoms on the following link and give to GP. Plus the other link. Many on the forum have had to source their own hormones but that should not be necessary.
email louise.roberts@thyroiduk.org.uk and ask for a copy of Dr Toft's online Pulse article and highlight the part where he states if antibodies are present we should be prescribed.
Thank you so much for your advice. I knew something had to be wrong as all the symptoms are there, not to mention the unjustified weight gain. I did believe it to be Hashimotos Disease when I saw the antibodies results. I really hope the Dr offers treatment even though I am not at the TSH 10 level. I believe my result has doubled in the last year. That is not right!
If doctor doesn't prescribe for you, tell her you will have to source your own as you are far too unwell. The thing is 'they' cannot see into our body to know what is actually going on and how unwell we can feel. We have to take our life into our own hands if doctors aren't co-operative. They just do as they're told and are poorly trained.
Many will prescribe with your results i.e. nearly 8.
My results then were just over the normal levels so my GP did nothing and earlier this year, I was diagnosed with Chronic Fatigue Syndrome.
If you had results that were over the range your doctor should have repeated those tests 3 months later, to see whether they had got worse, stayed the same or improved, not just fobbed you off for a year then diagnosed you with CFS.
I decided to do some investigating of my own so booked a Thyroid Plus blood test through Medichecks and the results have just come in.
My TSH is 7.35 (high) and my thyroglobulin is 116 (high).
If you've had a Thyroid Plus blood test you must have more results than just TSH and Thyroglobulin. And I suspect what you've had tested is not Thyroglobulin but Thyroglobulin Antibodies, which isn't the same thing.
Could you post all of your results and reference ranges please. Did you do the test first thing in the morning, fasted except for water?
Suspect subclinical hypothyroidism (SCH) if TSH is above the reference range and FT4 is within the reference range. In non-pregnant people repeat TSH and T4 (ideally at the same time of day) 3–6 months after the initial result to exclude transient causes of a raised TSH (such as intercurrent illness) and to confirm the diagnosis of SCH.
Many people with SCH feel better if they are treated for hypothyroidism. (I know I did, but I'd been left to rot for such a long time that improvements took ages.) Your Tg antibodies are slightly over the range, and this indicates that your thyroid condition is likely to get worse.
Unfortunately, there is no way of knowing in advance how quickly your thyroid will fail badly enough to get a diagnosis of overt hypothyroidism. It could take years or it might never happen.
Your best bet is to try and persuade your doctor to give you a trial of levothyroxine to see how you get on with it.
Many people with SCH do not need treatment, but if a decision is made to treat, prescribe levothyroxine (LT4).
Do not prescribe combination therapy (LT4 and LT3) in primary care.
Aim (in most people) to reach a stable TSH level in the lower half of the reference range (0.4–2.5 mU/L).
Further down it says :
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.
In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.
In asymptomatic people, observe and repeat thyroid function tests (TFTs) in 6 months.
Follow up of people with SCH who are started on LT4
Reassess symptoms on treatment. If symptoms have improved, lifelong treatment may be considered. If symptoms have not improved or if adverse effects are reported, stop LT4 after a 3–6 month trial.
Once TSH has normalized, TFTs should be measured at least annually thereafter.
If lipids were elevated at initial assessment, recheck to see if they have improved adequately or the person needs therapy for dyslipidaemia — for more information, see the CKS topic on CVD risk assessment and management.
Follow up of people with SCH who are not started on LT4
If TSH has normalized without treatment, no further testing is needed if the person is asymptomatic, has negative autoantibodies, and does not have a goitre.
If TSH remains elevated, arrange repeat TFTs every 6 months for the first 2 years and then annually.
Arrange annual TFTs in people with SCH who are thyroid peroxidase antibody (TPOAb) positive or have a goitre.
Arrange repeat TFTs every 3 years in people with SCH who are TPOAb negative.
If lipids were elevated at initial assessment, recheck these to see if the person needs treatment for dyslipidaemia — for more information, see the CKS topic on CVD risk assessment and management.
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To lower your antibodies you may find a gluten-free diet helps - it has to be stuck too ruthlessly though, to have any benefit. People who are hypothyroid often get benefits from going gluten-free even if they don't have autoimmune hypothyroidism and don't have coeliac disease. It is worth a 3-month trial - if it doesn't help you can always go back to eating gluten again.
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A common issue for people with hypothyroidism is low stomach acid. If you search for posts on here about gut health (sorry, that isn't easy, the search function is dreadful), and stomach acid you might feel better for it.
With low stomach acid, nutrient absorption suffers. Getting nutrients optimised helps us to feel better.
If the worst comes to the worst and your GP won't help, try and see a different doctor or switch practices. It's always a risk though, that you could go from the frying pan into the fire.
In the end, it is possible to treat yourself by buying meds off the internet. But you would never get a diagnosis of hypothyroidism from the NHS then, which may be important to you.
I have seen several people mention buying meds off the internet - what exactly would I have to get?
The test results plus all the symptoms I have dealt with for the last year should be enough for them to do something about it. Prevention is better than a cure I believe.
I was first told my thyroid was "borderline underactive" in the early 90s, and was still being told that I suffered from subclinical hypothyroidism in 2013. I begged and begged and was finally given my first prescription (very grudgingly) in 2013. With hindsight I would say I was suffering with a thyroid problem of some kind since I was a child.
Prevention of a problem may be the best idea in theory but the NHS doesn't appear to approve of it - it costs too much.
What you need to do...
1) Try a gluten-free diet.
2) Optimise your vitamin B12, folate, ferritin, iron, and vitamin D. You could ask your doctor to test these. You might be lucky...
3) You could try Levo or NDT to start off with. I know nothing about buying Levo online, I've never tried it. The cheapest NDTs are from Thailand, and they are usually sold in bottles of 1000. I am probably out of date with pricing, but it used to cost about £40 - £50 for 1000 Thyroid-S, but I think the price may have doubled now.
4) You could decide what you want to try and ask for opinions. Once you've decided, then ask for people to send you reliable suppliers via PM (private message). Unfortunately, banks, credit card companies and other money organisations are making it harder and harder to spend money on things which are prescription only.
I think for me, it's alarming that the symptoms are as bad as they are and the NHS don't seem to want to do much about it. In the last 12 months I have gained 3 stone in weight and most days I'm too tired to get through the day without a sleep in the afternoon. I have lots of the other symptoms too. We are also hoping to start fertility treatment in January as we have been diagnosed with unexplained infertility but from what I can see, infertility is a symptom of this too. We can't start that until my BMI is down but no matter what diet I try (have attempted Weight Watchers, Slimming World, 5:2 and alternate day fasting in the past year alone) I don't lose weight. The weight gain alone is very hard for me as I am only 5ft 3in and the 3st gain shows terribly.
It could be your ace, so to speak. You are far more likely to conceive with a TSH in the lower half of the range.
For future reference notice the sentence buried at the bottom of that link I just gave :
Women with known thyroid dysfunction who are taking levothyroxine may need the dose increased by 30–50% from as early as 4–6 weeks gestation [De Groot et al, 2012].
I should also point out that you really, really need to find out your levels of your basic nutrients before conception, and get them to optimal. Your gut health will have been compromised by your SCH, and your nutrients are likely to be low.
There are possible consequences to a foetus when the mother has low iron, low B12, low folate, and low vitamin D (that's if she can get pregnant at all with low levels). And there are consequences for you too. Low nutrients make people feel terrible.
It would be worth reading the American Thyroid Association Guidelines on treatment of hypothyroidism, looking for references to conception, subclinical hypothyroidism, pregnancy etc :
Regarding your dieting and exercising... I know you've been told to lose weight. But what kind of diet are you following? Low fat? Low calorie? Are you doing loads of exercising?
People with thyroid problems have limited amounts of T3 available. Eating too little and exercising too much can use up even more of your T3 leaving you with too little for the basic functions your body needs to do - digest food, breathe, make your heart pump, move muscles.
Also, low fat diets aren't healthy. The body needs healthy fats.
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