I have been ill since November 2017 and thought I had the flu. I noticed weight gain and terrible tiredness. My doctor got me scanned for Ovarian cancer. I dont smoke drink eat processed or sugar products and I swim 1 hour a day. My blood was tested in August and my TSH was 18.44. I was not treated for an hypothyroid despite having 9 of the 10 symptoms. Erratic periods do not happen at 65!!!!!
I was retested 6 weeks later and it was 14.44 and I was told my blood had got better. next test was 10.44. I was not told these results till a month ago. I was then given Levothyroxine 50 g 3 weeks ago which was increased to 10 g 2 weeks later. I am 4 stone heavier and suffer immense joint pain. I scarcely eat as I have no appetite and cant eat my normal diet but live on cracker cheese and chicken. I wish to know how long does the Levothyroxine take to work , when will my joints improve ( I am still swimming every day and doing water exercises ) and when will my weight stop rising. I just feel I am living in someone else's body.
Written by
MitziMax
To view profiles and participate in discussions please or .
Unless you eat healthily and importantly, eat enough, you are less likely to address your weight or other symptoms. Eating too few calories when hypothyroid, can be counterproductive. Apart from requiring a balanced, nutritious diet for general good health, effective thyroid functioning requires optimal levels of certain nutrients such as selenium, zinc, B vitamins; whilst others such as Vit D, will tend to be low in association with poor thyroid function, made worse by lack of sunshine in the northern hemisphere. You are very new to taking Levothyroxine and it isn't a quick fix like taking an aspirin for a headache. It can take anything up to 12 weeks for the hormone to have optimal effect, even assuming you are on the correct dose for you, so patience is definitely important. You probably were ill for a good while before diagnosis, so can't expect your body to recover overnight. Swimming is probably a gentle enough exercise, but hard exercise can again, be counterproductive, and drain our reserve of T3. Painful joints can definitely be associated with hypothyroidism but equally may have other causes such as inflammation, and of course won't be helped by your weight gain (I quite suddenly saw my weight start to increase, and gained the same amount of weight as you in a 12 month period. It definitely compounds my kyposcoliosis and deteriorating spine ......) Hence why a good diet is a must, as is supplementing to make up any identified deficiencies - you can have levels tested by these companies thyroiduk.org.uk/tuk/testin...
You've mentioned being diagnosed and medicated based on your TSH, but this is a pituitary hormone not a thyroid hormone, and beyond initial diagnosis, is inadequate to know what is the functioning of your thyroid or the levels of your thyroid hormones. If your GP won't test Free T3 and Free T4, you can have them tested privately along with your other tests. It would also be useful to know if your hypothyroidism is ideopathic, or has arisen from you having the auoimmune condition known as Autoimmune Thyroiditis aka Hashimoto's disease after the Dr who discovered it. It won't alter the treatment for your hypothyroidism but will help you to make decisions about changes you can consider making, such as going gluten and/or dairy-free for instance. Again, having the testing mentioned, can identify the antibodies in your blood that are indicative of Hashimoto's.
Thank you so much MaiseGray. I have bought Brazil nuts, salmon, tuna, artichoke, strawberries blueberries and yogurt to get my intake of iodine selenium antioxidants etc and I will force myself to eat a healthy diet as I did before. You have given me good advice thank you
Just one point about the Brazil nuts, unless it says on the packet that they were grown in selenium-rich soil, they won't contain much selenium. Most soils are depleted of selenium.
It would be a very good idea to get your vit D, vit B12, folate and ferritin tested. These are likely to be low - due to the hypo causing low stomach acid - and you probably won't be able to get enough just from food. You could very well need extra supplementation.
I have only been recently diagnosed myself, but think it takes longer than three weeks to make a difference. I’m surprised that you were started on 50mg and then raised to 100mg after two weeks (have I read that right?). I think they normally wait six to eight weeks, repeat the blood test and then raise the medication if necessary. Let’s hope your doctor knows what he’s doing! I too have put on four stone with a reduced appetite. I’m sure you will get a lot of help here, many of the sufferers know more than the GPs, a lot more😂 Best of luck, take care.
It’s a bit of a journey and I’m afraid you are only just starting out. It’s terrible that you were made to suffer when you should have been treated from the first time your TSH was high. I’m a swimmer too and my endo made me cut it right back when I was first diagnosed and slowly build up again. He wanted me to cut to 10% of my usual exercise, but I negotiated to 50% with regular pauses and rests rather than swimming all the lengths without stopping. I wish you luck, stay on the site - read up on the condition, ask questions - this is a very special and supportive community of Thyroidites. There’s a lot of information and common sense on here. x
Your back will improve with optimal thyroid treatment and supplements 😊
Sorry your going through so much right now. I do agree after doing tons of research for my own weight issues it seems common that a low calorie diet and high calorie diet are not good for people with thyroid disease. I understand your flustration Ihave gained so much weight after my thyroidectomy and the joint/tendon pains are life changing I used to be fit but now I'm just fat and still looking for the end of the tunnel ....it's still so far away.
Bloods should be retested 6-8 weeks after each dose increase. Levothyroxine is increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, and need regular testing and very often supplementing to maintain adequate levels
Ask GP to test vitamins and thyroid antibodies at next test.
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, best not mentioned to GP or phlebotomist)
NICE guidelines saying how to initiate and increase.
Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Make sure vitamins and antibodies tested too after 6-8 weeks on increased dose of 100mcg
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, best not mentioned to GP or phlebotomist)
The title of your post is "Misdiagnosis of hypothyroidism". I'm sorry to tell you that with a TSH of 18 or even 10, both these numbers indicate that you are significantly hypothyroid.
Untreated hypothyroidism has lots of bad effects on the body, so avoiding treatment is not a good idea at all.
It can take a long time to recover from the effects of hypothyroidism once treatment starts. The condition is life-long, but many people do eventually feel well as long as they are adequately medicated.
Doctors judge whether someone is adequately medicated based on TSH which is produced by the pituitary, not the thyroid. It is a poor measure of health in thyroid disease, sadly, but you won't get many doctors to believe that.
Patients have found out that the best indicator of whether someone is under-treated, correctly treated or over-treated is the Free T3. It is also helpful to get Free T4 tested. It's definitely second best compared to Free T3 though. Best of all is getting both Free T3 and Free T4 tested from the same blood sample.
Getting Total T3 measured is pointless, as is getting T3 Uptake tested, which is bad news for anyone from the US where the tests still seem to have an iron grip on doctors.
Another piece of advice - in recent years there has been an increase in research done on hypothyroidism in people classified as elderly (which is anyone aged over 50, 55, 60, 65, or 70, ... depending on the doctor). I don't know if just the UK is affected or whether it is general throughout the world. Researchers have decided that having a TSH of 10 is absolutely fine and is "safer" for the elderly. In fact what they've done is persuaded themselves that since the elderly are often tired anyway they don't need enough thyroid treatment to make them feel well because it doesn't make them feel better.
What these researchers ignore is that they don't know the TSH of healthy people with no known thyroid disease and they are keeping hypothyroid people very sick. You might find this link of use if you have to persuade your doctor to treat you sufficiently to bring down your TSH to about 1 or under :
Very interesting. My title was because they tested me for Ovarian ,colon and throat cancer and did no tloisten to me. I not have a great doctor. Thank you .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Misdiagnosis, not sure of next step
Menopause or hypothyroid?
Subclinical hypothyroidism 
Hypothyroidism and fertility
Diabetes and hypothyroid
