Newly diagnosed

Hello everyone,

I was diagnosed with hypothyroidism about 10 days ago I've been started on levothyroxine and have been on it for 7 days. My blood results were:

TSH :4.22 mIU/L(0.3-3.94)

Free T4 : 11. pmol /L(12.3 - 20.2

Folate levels came back within range >20.0 ug/L - I'm on supplement though

Cholesterol 4.01mmol/L

B12 wasn't tested!!! Despite the fact that I've been lt PPI user - I'm stopping this now down to 7mg from 15 and using ratanadide to help me cope with rebound reflux

Other blood results which I don't understand

6 months ago started having epigastric soreness, nausea, flactulace and can eat much and have cut out all trigger foods and sort of tried FODMP and probiotic symprove but nothing is working. Had endoscopy, ultra sound, barium swallow and CT scan but all that's come back is constipation, quite bad

They are saying it's IBS but I've had its for 20 in my bowel and this feels different in that the pain is soreness not cramping and is higher at bottom of my breastbone and it is always there to some degree. Also nausea is daily ongoing relentless to varying degrees of intensity. Despite restricted food intake I have gained weight not lost as I would have expected to. Gone from 10st 4lb to 12st 6lbs.

Have suffered from depression for decades but it has become far more severe in past 5 years and dreadful in past 2 years. I have lost my job (was a social worker) and struggled with getting benefits. Finally secured occupational pension so now financially secure. Also suffered sexual assault in 2013 and badly injured my coccyx and it took nhs 8 months to get me into surgery for this

What led me to get blood test and discover hypothyroid was worsening moods despite antidepressants and weight gain despite reduced food intake Also aced everywhere and was tiered all the time but psychiatrist an GP put all this down to depression. I knew deep down there was something else wrong, I just knew

Since starting levo and cutting ppi to very low dose my stomach pain is worse. I take 7mg of ppi in morning before food and levo midnight 4 hours after my supper

Will the gut irritation subside? Been on levo for 7 days.

How fast does weight start to drop, seen no reduction yet

Are the tummy problems described familiar to anyone else? I was hoping they were linked to hypo and when I started levo they might improve, but not so far.

If levo doesn't work well how much of a chance of getting the natural thyroid via GP on NHS.

All in all I I'm feeling quite desperate, although my energy/fatigue aches have reduced a bit in last couple of days.

Very worried about my tummy problems which just will not get better despite huge efforts on my part to avoid processed food, alcohol, coffee,

Weight gain has left me feeling utterly miserable. When my mood is not too bad I walk a lot. About 1 1/2 hours most days. But it makes no difference.

Any support or guidance would be so appreciated

15 Replies

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  • Sorry to hear you're feeling unwell. Your story will be familiar to lots of us here.

    I have no read experience w the gastric symptoms you describe except I will say I have had nausea on and off for months now and I don't think appetite issues are unusual. I attribute my recent weight gain to the fact that I can only stomach a limited range of foods which are as you can imagine more tasty than healthy.

    Once on an optimal dose of meds and vits/mins you will see some improvements, but it will take longer than a week. You may read however long you've been unwell it can take that long to get well again.

    If it comes as any consolation it sounds like your gp made an early move to get you on meds rather than wait for your tsh to rise to 10, which can be a nightmare.

    For the reflux, have you tried raising the head of your bed (on bricks or similar)? It may also help to supplement stomach acid and see if you feel better. I imagine you'd have to come off your ppi for a couple of days to give it a go. Some of us find we can't digest food efficiently because our stomach acid is too dilute, thus all the nutritional deficits many of us have. You can buy pepcid/hcl tablets or some folk take apple cider vinegar. If you google it you will learn more and see how you feel about giving that a go.

  • Thanks for your reply puncturedbicycle I will think about the stomach acid thing and perhaps try coming off ppi completely and trying apple cider vinegar or something similar. Already have the head of my bed up.

    Hattie x

  • It is something to consider. It's a bit off-piste as far as the doctors are concerned and will I assume go against their advice. Just so you know, I'm not a doctor. :-) If you tried it and found no improvement you could always go back to your routine.

    The thing about ppis is that they can make it hard to absorb nutrients (esp b12 if I'm not mistaken) and can have implications for your kidneys. Some people need them for longer than the 14 day period for which they're meant to be used - horses for courses - but it might be worth finding out if using digestive enzymes/hcl works for you as the ppi doesn't seem to be giving you total relief anyway.

  • It takes time to get well when you've been hypothyroid. You will be on a starter dose and doc will check blood levels in anything from 4-8 weeks. He/she will then adjust meds up and you have to wait again for blood tests. This may well repeat a few times before you are on the best dose. Only then, if levothyroxine doesn't seem to be helping well would you consider other thyroid meds. Your gp will not prescribe NDT, but you may be able to get liothyronine from your psychiatrist. But these issues are for much later on.

    Others will have to help you with the digestive issues. People with hypothyroidism tend to have low stomach acid, but docs still give ppi's. If it is low stomach acid, some people use betaine or apple cider vinegar, but these didn't do much for me.

  • Thanks bet1, guess I've just got to be a bit more patient, I no it's early days, just want to feel better. This on top of the depression has just about finished me off

    Hattie x

  • I know all about the depression. I really empathise. But you will get through this. I tried many antidepressants to no avail, and was eventually helped by a psychiatrist who prescribed liothyronine. I was not converting the Levo sufficiently to t3. It is hard, but there are answers. Keep going. X

  • Thanks so much, will talk it through we my shrink when I see her next

  • Try B12. My gut was very irritated too, was very annoying feeling. I thought nothing helps with it until I found out I was low on B12.

    I bought B12 spray (1 200 mcg) and it helped in two days. It didn't fully cure me, but took away the annoying feeling and helped big time.

    It also reduced nausea to tolerable level. But i figure I am still slightly nauseous , because my thyroid is failing and I am not getting treatment yet.

  • All your symtoms sound very similar to my symptoms of the past 25 years.. gradually getting worse.. I've been prescribed various drugs, anti depressants and a ridulous amount of thyroxide for hypothyroidism which gave me toxicamia.. I have now gone to Dr Barry Peatfield a metaboloist and nutrionalist who has diagnosed adrenal gland failure with hypothyroidism . . low adrenal gland function will not process gluton or lactose.. the withdrawal is horrid but worth it.. I'm now taking natural medication and supplements and eating fresh healthy meals..its 5 weeks since I started my new medication and I've turned a corner and feel better then I have in the last 2 years..

    I've still a long way to go ..

    but eradicating gluton and lactose from your diet will help with the digestion problems ..

  • Thank for your reply, my heart goes onto you, it's miserable. I have eliminated gluten but am still working on the lactulose elimination. Taking supplement. Trying to stick to low FODMP foods and like you sticking to fresh healthy food. A friend if mine who is coeliac has been telling me to minimise carbs but I find this hard as a bowl of porridge is one of the few things I still look forward to.

    I hope you continue to improve

    Hattie x

  • Hi Justine, I'm going back to my GP to ask for b12 levels.

    Thanks for coming back to me, feels better to talk to others who are in the same boat

    Hattie x

  • Your doctor should have told you it takes 5-6 weeks for each dose increase to fully get into your system so you need to go back in 6 weeks for another blood test. This is a repeated cycle till you feel well and bloods look ok. So always ask for a copy of your bloods and the ranges and then you can post them on here if you are unsure what they are telling you. The ranges are very importand as they differ from lab to lab so we need to know what your lab ranges are to comment accurately on your results.

    Beware of doctors telling you any result is normal. That usually means it is in range but where in the range is often importand so normal to me is low TSH and FT3 and FT4 high in the range.

    If you access the Thyroid Uk site you will find loads of information to help you so give it a read and shout out if there is something you don't understand.

    Hope you soon see some improvement and welcome to the forum!

  • Thanks Silverfox, 10 days in and I've spent the past two days feeling like I have the flu. No energy, tummy feels sore and inflamed, weeping all the time, think I'd rather be dead than carry on feeling this bad. I felt ill for two years, all put down to depression and then last august my stomach started causing problems and I've been living in misery ever since, I just want to be well again. How can they just leave people suffering.

  • Hi there, I am sorry to hear of your health struggles. Try Zinc L carnosine: Pure Encapsulations makes one called Peptic-Care ZC. Has done wonders for me, it sounds like you may have Leaky Gut, which a lot of us with thyroid issues have. Also, it sounds like you may have Hashimotos disease, look it up, it is very common with Hypothyroidism. Hashimotos involves the whole body, and needs to be addressed by diet. Usually need to avoid gluten, as this is one of the triggers to Leaky Gut.

    Also, many people improve with selenium, B vitamins, and digestive enzymes, as well as probiotics. Stay away from sugar, flour, and processed foods. Look up Autoimmune disease, specifically Hashimotos, and look up diets for these, as they will improve your stomach issues. Get off the PPI, as these make Leaky Gut and stomach issues much worse.

    Good Luck, life is a journey and this is just a point of Learning. We are all on that path together! Namaste

  • I also forgot to tell you about thyroid medicines. Most doctors just automatically put you on either Synthroid or Levothyroxin. This is a synthetic T4. I am on Cytomel, which is T3. I cannot use T4 all by itself , so it does not work well for me. There are thousands upon thousands of people who have problems with Synthroid. Look up on Google. Some side effects include blood clots, heart attacks, and on and on. Most doctors are clueless as to the problems, and so don't know. I have a wonderful Nurse practitioner that is a holistic one, and knows this. I also take a natural T4, which is called nature thyroid, made from pigs. Do research and see all the different thyroid medicines. They all are different, and you may do better on something other than what you are currently taking. I would suggest a naturopath, Functional medicine doctor, or someone like who I have, traditional doctors just don't get the importance of diet, vitamins, and allergies and how these all affect your thyroid health. Good luck, it takes time, and will be something that you must become a part of not just expect to take a pill and be ok.

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