Hi guys, ant advice? I've been diagnosed with hypo and now hashimotos, for 5 mths I have been unable to tolerate levo doses for more than 3 weeks at a time. Tsh was 131.5 and t4 non detectable, started on 175mcg that's when it started... symptoms of being over medicated! Slowly dropped over the last 4 mths to 25mcg, had my 6 week test done and tsh was back up to 48?!
Upped to 50mcg, 3 weeks in and the hyper symptoms have started yet again but with minor chest discomfort..
Totally had enough now, seeing dr this PM and want to grill them to get it right, any help much appreciated.
😘
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Ninney2019
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Starting on 175mcg from nothing was a bit crazy. What was your GP thinking! Most people start on 50mcg. I started on 25mcg, partly because I was severely hypo. Then you gradually build up to the correct dose increasing after blood tests every six weeks or so, so your body has time to adjust.
I’m very sensitive to Levo, so I have to increase even more slowly. Unfortunately, treating hypothyroidism is a bit of journey rather than a quick kill. This is especially so if you have hashimotos which means the thyroxine from your own thyroid waxes and wanes so makes it more difficult to stabilise levels.
If I’d have started on 175mcg, despite a really high TSH and desperately low T3 and T4, I think I’d have ended up hospitalised!
Your GP is crazy messing your dose about all over the place. Your body must wonder what the heck is going on. You need to increase more slowly and give your body (and heart) time to adjust. Particularly as you were severely hypothyroid, possibly for some time.
That’s my thoughts. I’m sure others on here will advise. 🤸🏿♀️🥛
Thank you for replying, I'm tempted to ask for a decrease to 37.5 instead of 25 and see where I go, hopefully that may help as 50 tips me one way and 25 doesnt seem to cut it..?!🤦♀️
I feel fine, not overly lethargic etc, was only by chance I found out I was hypo due to losing a toenail lol😂
Dropping from 175 mcg to 25 mcg in 5 months is not slow. Quite apart from starting you on much too high a dose, your doctor has compounded the problem by dropping it too quickly. You poor body must be in a state of shock.
To have such a high TSH, you must have been hypo for a long, long time. It doesn't get that high over-night. So, your body has probably been drained of nutrients. You should ask your doctor to test your vit D, vit B12, folate and ferritin. He won't understand the results, so post them on here, with the ranges, and someone will advise you how to supplement to optimise them. If nutrients aren't optimal, our body won't be able to use thyroid hormone correctly, which has more than likely added to your feelings of over-medication, not to mention your symptoms.
Hashi's people are very often gluten-sensitive, so it would be a good idea to try a gluten-free diet, to see if that helps with your symptoms.
But, the most important thing is to go slowly. Do not change your dose by more than 25 mcg every six weeks. There are not short cuts with this disease.
PS, maybe change your doctor, too. This one has no idea what he's doing.
Thanks for this info, I am having bloods done Wednesday as the new dr I'm seeing has said basically the same as you, I've seen 4 drs so far and this is the only one that seems to be listening to me. Wants me to have bloods every 2/3 weeks so he can monitor the levels effectively to be able to help me.
I'm not sure that testing every 2/3 is a good idea. After an increase in dose, it takes the body six to eight weeks to completely process it. So, you won't get the true levels if you test too soon. I don't see how he can do a better job of monitoring by testing too soon.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have Hashimoto's
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Dose should be started slowly and increases or decreases done slowly
Ridiculously high dose to have started on. Standard starter dose is 50mcg
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Many people find different brands of Levothyroxine 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. Teva is the only brand that makes 75mcg tablet.
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist
approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.
Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Having untreated hypothyroidism for a long time will cause your stress hormone levels (cortisol and adrenaline) to become deranged. Doctors tend to ignore this fact (if they even know it), because in many people the stress hormones will gradually fix themselves once treatment for hypothyroidism starts. It can take a long time though.
In my opinion, the fact that thyroid hormones need to be introduced slowly is mostly due to the fact that stress hormones don't change quickly once they've been disturbed. If everything goes well, then as the thyroid hormones are raised the stress hormones drop.
It is a good idea to help the stress hormones fix themselves (if possible) by reducing stresses in your life. The kind of things we all (thyroid patients) need to do, in an ideal world, are :
1) Make sure you eat enough healthy food. Good fats, generous amounts of protein, and keep the sugar levels low. Your body has not been working well for ages and needs sufficient calories to start all the repair processes which just didn't happen while thyroid hormones were too low. This is not the time to start trying to lose weight. Being hungry and eating too little stresses the body enormously. Living through a famine is very stressful!
2) Don't over-exercise. At most you should do some gentle walking or swimming, maybe some basic yoga. You can introduce harder exercise once you are well, if you want to.
3) Hypothyroidism damages the gut. We usually have too little stomach acid, but unfortunately high and low stomach acid levels have similar symptoms, and people jump to the conclusion that they must have too much stomach acid and reduce it even further with pills. (Some people do have too much stomach acid, but its rare.) As a result the body can't extract nutrients - minerals and vitamins - from the diet very well. Many of us discover that we have low levels of lots of nutrients, and supplementing appropriately is very helpful. You should ask your doctor to test your nutrient levels - the ones we mostly recommend getting tested are vitamin B12, folate, vitamin D, iron and ferritin (iron stores). Your doctor probably won't test iron as well as ferritin, they tend to do just ferritin.
4) Sleep - I know this is a very difficult one. If you can get plenty of sleep this will help. As a life-long insomniac I always feel hypocritical writing about sleep!
5) Get copies of all your blood test results from, say, a year or two before your diagnosis onwards. Make sure that they include reference ranges. You need to start keeping records of results, dosages, makes of Levo you take, symptoms etc. You are legally entitled to copies of your test results. You can't be refused, and you can't be charged for the paper or anything else. You must take proof of identity with you when you ask. You might be able to get access to test results on line, but not all surgeries are geared up for this.
6) It may turn out that your stress hormones don't fix themselves and you end up with permanently high or low levels of cortisol. If that happens you have to cross that bridge when you come to it. It's a big subject, dealing with the adrenal glands, and dealing with things like diet, nutrients and sleep should be done first.
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