What does depression feel like when hypo? - Thyroid UK

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What does depression feel like when hypo?

Leanne_j88 profile image
88 Replies

Hi I am a newbie. Question says it all really. To me it feels like a crushing, overwhelming, overtaking feeling. Like I'm overshadowed and welled up with gloom. Sorry for sounding poetic, but I just feel so depressed and sad at times when I should be happy for things going on in my life. I am undermedicated I know, I just don't know when the dose will change how I feel. Diagnosed 2013 with hypothyroid, taking 150mcg levothyroxine since Sep 2017 from 175mcg levothyroxine.

Thanks

December 2017

TSH 4.79 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.6 (3.1 - 6.8)

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Leanne_j88 profile image
Leanne_j88
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Was there a further increase of 25mcg presribed following research December results? Have you seen the doctor since?

Have you ever had any Nutrients levels tested?

Vitamin D, Calcium; B12 & Folate; Ferritin.

You may be low in these and need urgent supplementation.

Sorry about typing errors. Predictive text !!!

That should read :

Was there a further increase - following the December results.

Leanne_j88 profile image
Leanne_j88 in reply to Mary-intussuception

Hi no there wasn't a further increase

Leanne_j88 profile image
Leanne_j88 in reply to Mary-intussuception

Hi no further increase. I saw GP and she said I was on a high enough dose, no need to increase.

I have B12 deficiency and iron deficiency and vit D deficiency. Also deficient folate.

Calcium hasn't been checked in 3 years but last time it was at the bottom of the range. I have problems with my bones as well. Do I post results here? Thanks

Clutter profile image
Clutter in reply to Leanne_j88

Leanne_j88,

You are undermedicated to have TSH over range while taking Levothyroxine. If your GP won't give you an increase see a different GP at the practice. Change practice if necessary.

Gambit62 profile image
Gambit62

Leanne - depression is depression whatever the cause. I went through a really bad patch when I started on levo (kicked off by starting on the levo a couple of months ago). Not convinced my levels are right at the moment but it's certainly not the major problem any more (though it really was initially). I know of a fellow sufferer who described it as being the worse part of her hypothyroidism and the relief she felt when she realised that her body had adjusted and it wasn't there anymore

How long have you been suffering from low mood? Do you have any coping strategies to help you through until the levo kicks in. I find that meditation helps me a lot - particularly if I'm trying to deal with intrusive thoughts. Exercise is another coping strategy but somewhat more difficult when you are feeling totally lacking in energy because your thyroid hormones are out of whack.

Really sucks that it takes so long for your body to adjust to changes in levo.

One of the really cruel things about depression is that it tends to reverse the link between motivation and desire so you actually need to start doing things before you want to do them - don't know if that is part of what is going on for you at the moment.

There are a number of forums on HU dealing with depression and you might find it helps you feel less isolated to post on one of those.

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

Thanks I have iron deficiency and B12 deficiency and vit D deficiency and folate deficiency so I still need to go on the depression forum?

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

Suffering from low mood since dose reduction. No further increase given.

Gambit62 profile image
Gambit62 in reply to Leanne_j88

sorry not clear when that was. I read your post above as saying you were on 150 mcg until September and then it was upped to 175. Was it the other way round.

3 months is a long time to be feeling that low. The B12 deficiency and the iron deficiency aren't going to be helping either as both can also lead to depression. My experiences of depression mainly come from an undiagnosed B12 deficiency that went on unrecognised for decades. I was actually referring to one of the mental health forums rather than the PASoc forum when I talked about sharing on another forum eg

healthunlocked.com/mental-h...

but would also be good to know more on the PASoc community about how your diagnosis of B12 deficiency came about and what treatment you are having/problems you are having getting the correct treatment.

healthunlocked.com/pasoc

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

Other way round. Dose reduced. No further increase.

Gambit62 profile image
Gambit62 in reply to Leanne_j88

what lead to the reduction - quite obvious that the dose you are now on is far to low . Was the test in December private or NHS

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

The test was NHS. Result that led to reduction was:

Sep 2017

TSH 0.04 (0.2 - 4.2)

Free T4 19.2 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Gambit62 profile image
Gambit62 in reply to Leanne_j88

well, TSH might be on the low side but your T4 and T3 aren't high.

I'm not a medic and I'm pretty new to hypothyoridism but it really doesn't sound as if you are being treated properly at all. Makes me mad that GPs go by test results without actually talking to patients and asking them how they feel ... and without really understanding what the tests might really signify but just blindly follow an overly simplified list of instructions. Not entirely convinced that a robot wouldn't be a better option.

TSH is produced by the pituitary gland so I don't really get the logic that says it's the key measure for what is happening in your thyroid. Logic implies that another possibility for a low TSH has to be that your pituitary isn't working properly.

If you were genuinely over-medicated then I would have though that would have meant that your T3 and T4 levels would be high.

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

No GP didn't ask me how I felt. She said she was reducing and that was the end of it.

Gambit62 profile image
Gambit62 in reply to Leanne_j88

words totally fail me.

suggest you try writing using the information that Nanaedake provided, with a copy to the practice administrator ...

don't know if it will do any good though.

Any chance you could unilaterally go back to your previous dose? possible that the change in the frequency of prescriptions might not be noticed. Not ideal but ...

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

Worth a try. :)

Mary-intussuception profile image
Mary-intussuception in reply to Leanne_j88

You need an increase

haggisplant profile image
haggisplant in reply to Mary-intussuception

Often a slight dose adjustment is all that’s needed; for example taking x4 175 a week and x3 150 could have put you roughly in the right spot Levo wise; I don’t think anything will get better though till the other deficiencies are dealt with.

It must be awful :(

Talking to others about depression might help as it’s still depression, though you know you will feel better when physiological things are sorted out. It’s still helpful to get mental support too x

haggisplant profile image
haggisplant in reply to haggisplant

I’d see a different gp and ask to try the above regime. My blood test results now flag up ‘borderline’ results when they get to 3.5 as it’s so well known that if on Levo you need to be in the lower end of range.

The BMA Toft book on thyroid diseases states this and is useful to show gps as it is bma published.

haggisplant profile image
haggisplant in reply to haggisplant

Actually the pulse mag by him is better; get and show both for maximum effect!

Nanaedake profile image
Nanaedake in reply to Leanne_j88

You need to get your deficiencies sorted out. It's most likely the cause of feeling low. If you get all your deficiencies sorted and then still feel miserable there may be some other cause but I wouldn't attribute your feelings to anything other than physical causes until you've addressed all deficiencies first.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Do I post results? I supplement. Thanks

Mary-intussuception profile image
Mary-intussuception in reply to Leanne_j88

Yes, sorry Leanne, I go to bed early so didn't see your reply.

Leanne_j88 profile image
Leanne_j88 in reply to Mary-intussuception

No problem :)

Mary-intussuception profile image
Mary-intussuception in reply to Leanne_j88

Hi.

I wouldn't be overly concerned about asking for some time off to make a hospital appointment and GP appointment. Just enquire about it and test the ground?

Sorry don't have time to re-read all thread, but I gather you weren't given Loading doses of Vitamin D when deficient but have brought it up yourself now. I would definitely call Haematology and ask about arranging B12 injections. Ask about Pernicious Anemia testing.

You need to go back up to 175mcg. I thought you said that result was after 3 months on 175mcg - which would have meant going up to 200mcg.

However if you were on 150mcg from September to December you need to be back on 175mcg.

SlowDragon profile image
SlowDragonAdministrator in reply to Leanne_j88

Your vitamins are low and you feel depressed BECAUSE you are under medicated

See a different GP

You need a 25mcg dose increase in Levo

TSH should be around one (or slightly less) and FT4 towards the top of range and FT3 at least half way in range

Leanne_j88 profile image
Leanne_j88 in reply to Gambit62

GP says symptoms are in my head and is suggesting mental illness so maybe time to go down that route?

Constipation, fatigue, headaches, dry skin, painful and heavy periods, weight gain, hair loss, joint pain, pins and needles, flaky nails, puffy eyes.

Gambit62 profile image
Gambit62 in reply to Leanne_j88

makes me a little mad when doctors think that depression or 'mental illness' is a diagnosis. It isn't it's a label and what they need to be doing is getting to whatever it is that is causing the imbalance that is causing your problems - whatever they are. Some physical conditions, such as B12 deficiency, thyroid problems, diabetes, iron deficiency put chemicals in your body out of balance and that can have a huge effect on your ability to cope with stress, leading to depression - ie depression is the symptom not the cause ... and what they should be doing is treating the cause not the symptom.

wish there was a magic wand I could wave to make your GP wake up to the blindingly obvious :)

DeeD123 profile image
DeeD123 in reply to Leanne_j88

Leanne_j88 I liked your post as it was the only thing to do. Fight your corner hard as it might be. Do not go down the antidepressant road. It’s an increase in dose you need not antidepressants. Everything you describe is saying hashimotoes attack. Download and print everything recommended,ask for referral to endo and insist they address you vitamin and iron deficiency. Good luck it’s not easy to face up to a doctor but you can do it. X

Jetzzz profile image
Jetzzz in reply to Leanne_j88

I came up against exactly the same problem and bought my own levothyroxin. The doctor could not give me more according to the NICE Guidelines. I waited 18 weeks for hospital appitment and thought finally the system has let me down. I couldn’t face feeling like it for nearly six months and read that the dose should be 1.7 to each kg of body weight

Over the years I have found when Levothyrocin is too low - a low slow feeling of being down and unable to function properly is felt. Your sleep quality deteriorates to a lighter sleep and you wake up feeling tired In the day you feel anxious about small things that wouldn’t normally bother you Concentration gradually becomes very poor and personally I have ended up falling asleep by early afternoon overcome by tiredness

I have been depressed in times of my life and know this feels different because it’s a sadness from a loss or being sad because I’m not happy with life. If Your depression is not caused by a life problem and is a low feeling of struggling to do the least little thing each day like trudging through mud it’s the lack of proper medication.

So very important are your levels of Vitamin D; All the B vitamins and A are very important and if you have under active thyroid you need more vitamins as you get older. There is a great SLOW RELEASE 100 B vitamin on H&B which has made a great difference to me. Vitamin D even the 1000mg from the doctor don’t agree with me very well I only take it if I haven’t manage to get outside for a walk in the light with evening meal

Taking thyroxin first thing in the morning with water when you wake at least 30-60 mins before breakfast IS VERY IMPORTANT and taking vitamin supplements MUCH later in the day at least four hours or more with lunch or in the evening with a meal is even better as they can inhibit the uptake of your levothyroxin

I have also found that on the whole I’m a healthy person which I believe is due to the good levels of Vit D giving me immunity - but after a bad cold or a flu which I might get once in a three year period I can recover without antibiotics but my function dips during the month afterwards like it’s taken a toll on all levels and I have needed more Levo after that illness.

Although I feel healthy I am not happy with being overweight and struggle everyday with this. Friends have fine well with weight loss cutting out carbs but after three days I get cold so need a small amount but find the small amounts of good I have to cut down to to lose weight is not sustainable and I have kept it up for three months at around 800-900 cals a day in the past and lost a kilo a week losing 10kg but I just can’t keep it up and then half creeps back on. Has anyone found a good eating plan for under active thyroid weight loss.

My plan consisted of

Breakfast

Small cereal 30grams and dessert spoon yogurt

Or boiled egg on toast

Lunch

Two revita OR one slice wholemeal

Boiled egg or sm mackerel fillet

Or Slice of chicken Breast. Or Babybel

Dinner

Palm size Chicken breast or fish with vegetables

Omelet mushroom and tomato

Small jacket pot Tuna / third of tin baked beans

IT WORKS with exercise walking every day. Going to aqua twice a week. It’s a fine line being able to do enough exercise without becoming exhausted.

But I just can’t keep up eating so little for more than about twelve weeks at a time. Feel desperate as haven’t got my weight under 100 kg for over ten years now.

Nanaedake profile image
Nanaedake

Being undermedicated and not getting enough thyroid hormone can make you feel gloomy. You may feel fearful and hopeless. Things that would normally be easy to do feel difficult. It feels like you cannot get everything done that you need to do and cannot work out solutions to problems.

More and more as I read posts on here I think that we need a higher dose of hormone than would be physiologically natural because there is so much potential for things to interfere with absorption and utilisation of levothyroxine. Even a small deficit seems to make a difference between functioning well and a downgrade in normal function. Lack of hormone is like a continual interference in a smooth running engine. It starts to judder.

The things the doctor/scientists measure to test health don't necessarily reveal the impact of thyroid disease. They test heart function and various quality of life measures but tiny levels of interference in all around function can be very debilitating. Being below par continually at all levels is wearing. It makes life difficult. Feeling fearful and miserable when you know that's not your normal state is upsetting, especially when no one offers you any solution and you can't see a resolution.

If you have not increased your meds after the results above then you are undermedicated and need a dose increase and retest in 6 weeks time. Your TSH probably needs to be around 1 or a little lower to feel well. That's where most people start to feel well. Also check vitamin levels as advised. Vitamin D, B12, folate and ferritin as it's common for these to be low in people with hypothyroid conditions. All vitamins need to be mid-range with B12 in the upper range for thyroid hormone to work effectively.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Hi no my GP said I was taking enough so no increase given. Also have vit D deficiency, folate deficiency, B12 deficiency, iron deficiency. Thanks

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Do you believe your GP is right that you don't need an increase in thyroid hormone?

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Not at all. I like to think I take what I need.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Well, I agree, you need a dose increase and retest in 6 weeks if the results above were your last blood test results.

Have you got thyroid antibodies?

Could you take someone with you when you visit your GP? You could take the documents by Professor Toft with you and ask for a dose increase.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Email dionne.fulcher @thyroiduk.org if you would like a copy of the Pulse article to show your GP. If your GP still refuses to increase dose see other GPs at the practice or change practice.

Professor Toft - Counterblast to Thyroid Guidelines

rcpe.ac.uk/sites/default/fi...

It's likely that being undermedicated has contributed to your vitamin deficiencies. Everything works together.

Search SeasideSusie and SlowDragon responses to other people and you will find hundreds of people on this forum with low vitamin levels due to being undermedicated or having Hashimotos thyroiditis which trashes vitamin levels.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Thyroid peroxidase antibody 379 (<34)

Thyroglobulin antibody 226.3 (<115)

Nanaedake profile image
Nanaedake in reply to Leanne_j88

So, did you know you have Hashimotos thyroiditis which is an autoimmune condition?

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Endo didn't tell me anything. Just said I have hypothyroidism. Am kind of frustrated that he didn't tell me.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Endo's don't use the term Hashimotos if in the West but it's commonly known as Hashimotos all around the world. Doctors call it autoimmune thyroiditis but maybe he didn't tell you that either? Well, so much for Endo's they don't know much so they don't tell anyone much I suppose. Your Endo's probably a diabetic specialist - Google and find out.

You can see how thyroid disease is diagnosed from this list.

Diagnosis of thyroid disease – Japan

japanthyroid.jp/en/guidelin...

japanthyroid.jp/en/guidelin...

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Nope, didn't even tell me I had autoimmune thyroiditis. Probably a diabetes specialist! Thanks

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Sorry no one to take with me to appointments. Husband keeps out of anything health related and my family treat me like a hypochondriac.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

I'm sorry that you haven't got any support. I'm afraid it's quite common with thyroid disease. It's very badly understood. So you're going to have to fight this one with the help of this forum then. Is there any GP in the practice who is a bit more sympathetic than the others?

And, by the way, you are NOT a hypochondriac.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

The one under my care is a locum. All the ones I have seen that are locums have said things like I have irritable bowel or I have stress or depression.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Well, next time you have an appointment, be as assertive as possible and tell them without any shadow of doubt that stress and depression are symptoms not a diagnosis. If they thought you actually had a mental health problem they would need to refer you to a psychiatrist as a GP is not qualified to diagnose mental health conditions.

What you need is for the GP to correctly address the physical health problems that are causing symptoms and making your miserable. You won't give up until this is achieved because you want your life back and other people like your family are depending on you.

The point of taking thyroid hormone is to be symptom free. Tell them that you have taken advice from NHS choices organisation for Thyroid disease and have discovered that other patients who were symptomatic are now well.

The method to become well is to increase thyroid medication until TSH is 1 or a little lower and to optimise all vitamins to mid-range and B12 near to the top of the range. You may need further investigations if vitamins are low and you may need to change your diet and go gluten free.

You will not begin to feel well until this is achieved and even then it can take time to recover but you CAN recover. Thyroid disease humiliates us. Doctors and your family should have more compassion.

Kalicocat profile image
Kalicocat in reply to Leanne_j88

Wow Leanne, our situations are exactly the same., it's very tough to go it all alone. I have diabetes as well as going though a horrendous perimenopause (probably from my metabolic nightmare of a body), and my doctor won't up my dose at the moment either. So I've been VERY hypoglycemic and I get the strangest sensations from it because my body doesn't react like it should to hypoglycemia when I need a dose increase. It takes my body a long time to get my glucose back up and I've even woken up in the middle of the night and had difficulty moving due to being very hypoglycemic.

Boohbette17 profile image
Boohbette17 in reply to Nanaedake

Totally agree ! If I may jump in... besides levothyroxine until I got on cytomel did I not get close to "me", & AT THE SAME TIME I upgraded my diet. Most hypothyroid patients have sensitivity to gluten but also casein it's a protein in dairy . Using Dr.SaraGottfrieds' Protocol for hormone resetting,I lost weight and reduce my antibodies by half!! FOOD IS POWERFUL💪🏻 🥦🍎🍊🍋🥑🍓🍇🍌

Give yourself earnest effort in the food first approach ( avoid mental meds, my opiniom) and you will be amazed at your mood improvements!😊👍

HUGS🤗🌺

saragottfriedmd.com/what-to...

saragottfriedmd.com/ditch-t...

Jazzw profile image
Jazzw

You’re undermedicated. You need an increase in levothyroxine. Your doctor sounds like someone who reacts (wrongly) to low TSH. Is there another doctor in your practice you can see? I’m afraid the one you’re seeing just isn’t knowledgeable enough about hypothyroidism and will happily keep you ill.

You deserve better than that. Please don’t give up - go back and ask for your dose to be reinstated AND for your B12, Vit D and ferritin levels to be tested, as I’d lay money on one, two or all of them being very low.

Big hugs xx

Edited to add - oh, I see those things ARE low!

Please tell me your doctor is treating those? If not, then a formal complaint might be in order...

Leanne_j88 profile image
Leanne_j88 in reply to Jazzw

Before supplementing vitamin B12 (February 2017) waiting on B12 injection for 5 months

Vitamin B12 231 (190 - 900)

Since being off folate (result taken December 2017)

Folate 1.7 (2.5 - 19.5)

Since having iron stopped in February 2017 (result taken December 2017)

Ferritin 18 (15 - 150)

Since taking 9000iu vitamin D (Better You Oral spray - 3x 3000iu with K2 and MK7, result taken December 2017)

Vitamin D total 54.2 (50 - 75 suboptimal)

Nanaedake profile image
Nanaedake

TSH 0.04 (0.2 - 4.2)

Free T4 19.2 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

TSH 0.04 (0.2 - 4.2) TSH is a pituitary hormone. When we have insufficient thyroid hormone in our body the pituitary gland signals the thyroid to produce more and so TSH rises but when we have enough thyroid hormone and are replete then TSH remains low as in your case here. It doesnt' matter that TSH is low if FT3 and FT4 are in range. Some people need a suppressed TSH to achieve a good enough FT3 level. It's the amount of T3 in our cells that makes the difference to how we feel and to our ability to function well.

FREE T4 19.2(12 - 22) As you can see your FT4 is near the top of the range but nicely in range. You need enough T4 to convert into T3 which is the active thyroid hormone that our cells, heart and brain need. FT4 is best in the top third of the range so yours was good here.

FREE T3 4.1 (3.1 - 6.8) Your FT3 is low as showing that your body is unable to convert T4 to T3 efficiently. Low T3 levels may contribute to symptoms but you were certainly not overmedicated here. If you were overmedicated you FT3 level would be over the top of the lab range. The top of the lab range is 6.8 so your FT3 result would have been higher than 6.8

Ask your doctor to explain why they reduced your dose on the basis of these results because your FT3 shows you were not overmedicated and TSH is a pituitary hormone not a thyroid hormone. Give your doctor a copy of Professor Toft's document.

Professor Toft - Counterblast to Thyroid Guidelines

rcpe.ac.uk/sites/default/fi...

Elevated TPO antibodies show you have Hashimotos thyroiditis generally called autoimmune thyroiditis by doctors.

Please do post your vitamin levels if you would like helpful suggestions. You may not be optimally treated and low vitamin levels prevent effective conversion of T4 to T3. Problems absorbing vitamins from food are common with thyroid conditions. Autoimmune thyroiditis also makes people more prone to other autoimmune conditions.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Before supplementing vitamin B12 (February 2017) waiting on B12 injection for 5 months

Vitamin B12 231 (190 - 900)

Since being off folate (result taken December 2017)

Folate 1.7 (2.5 - 19.5)

Since having iron stopped in February 2017 (result taken December 2017)

Ferritin 18 (15 - 150)

Since taking 9000iu vitamin D (Better You Oral spray - 3x 3000iu with K2 and MK7, result taken December 2017)

Vitamin D total 54.2 (50 - 75 suboptimal)

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Has your doctor ruled out pernicious anaemia by testing for intrinsic factor antibodies? Why have you waited for 5 months for B12 injection? What is the hold up?

See this post by SeasideSusie that give detailed information about similar low vitamin levels.

Detailed vitamin advice from SeasideSusie here:

healthunlocked.com/thyroidu...

Were you referred to a haematologist? If not then you should ask your GP to refer you. If referred before then ask to be referred back again to sort out iron and B12.

No wonder you are depressed with levels like this. I would return to the GP and ask why they think your levels are so low since you eat a good diet and were given supplements. Point out that your vitamin D levvels are still low despite a high level of supplementation. Ask GP what they plan to do to investigate your absorption problems.

As you have Hashimotos you would benefit from going strictly gluten free.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

I have tested negative for intrinsic factor antibodies but haven't been tested for MMA or homocysteine which I believe is required to rule out pernicious anaemia. I have told the surgery I go to work Monday to Friday 8:30 (when I leave to get a bus funded by my work) to 5:30 (when I arrive home from getting off the bus and walking home) so any other time for B12 injections would be fine. She said sorry clinic is not available at any other time and wouldn't offer me anything else that would benefit me.

Was under haematology back in Feb 2017, they won't accept me back without a re-referral. Will return to GP.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

You're right about the tests for B12. Are you the breadwinner for your family?

Is there a surgery near your work that you could walk to? If so, then ask if the GP can arrange for you to have your treatment there. Or could you have it at the hospital?

I hugely increased my B12 by taking sublingual methylcobalamin along with a B complex that contained all the methylated forms of the B's. I took 1000mcg of B12 daily and a B complex that contained methylfolate to increase folate levels. Of course it would be better if you were under supervison but you can't wait around jeopardising your health due to inconvenient or impossilbe NHS health provision.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

No my husband and I both have jobs. I am a temp worker and have been doing well in my job, so much so the company has kept me on another 7 months so I want to be seen as reliable. I just don't want to seem like I'm being a nuisance in asking for time off (if I need to) because work has been really busy lately and everyone has been struggling with getting their work done. There is no surgery near my work and there is a bus that would get to another hospital but it would mean a 15 minute walk.

So I could get the B12 injection done at a local hospital if I took in the ampoule?

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Ok, I understand the pressure of temporary work and trying to hold down a job when feeling ill and under pressure not to take time off. One of the weird things about thyroid disease is that things you would normally take in your stride and sort out become unsurmountable hurdles. You may be feeling more under pressure than you actually need to be although I know it's a difficult jobs market and losing your job is a real threat when a temp worker.

I was in a similar situation and just had to self supplement with vitamins because I couldn't afford private care and the NHS was doing nothing. As I started to feel better I got better jobs and slowly everything fell into place so you do have choices if you're willing to take control of your life.

Get advice from Healthunlocked pernicious anaemia forum on supplementing B12 and a B complex. I take Thorne Basic B for a B complex and get advice from the other forum on supplementing B12.

Right away you can take 1000mg of vitamin C because your body doesn't store it. You can also take magnesium citrate or another type as again your body doesnt' store it. Vitamin C will help to support adrenal function. You can order online. Get good quality supplements, the best you can afford. It will take over a year to get better but you will start to see an improvement in a few months once you get supplements for ALL your deficiencies.

You can use online labs to test to keep track of supplements. Check out Thyroid UK website to find out about reliable labs for tests.

Get your GP to check vitamin D and iron every 3 months if you are supplementing without NHS or use a reliable online lab as you should not over supplement vitamin D3 or iron. Your body stores them and it cannot easily reduce vitamin D that is stored so it can build up to toxic levels.

You can increase your iron levels through diet

You can help raise your iron level by eating a maximum 200g per week of liver, no more, due to its high Vit A content, and include lots of iron rich foods in your diet, weblink posted by SeasideSusie below.

apjcn.nhri.org.tw/server/in...

Helping iron levels with diet - post on HealthUnlocked.

healthunlocked.com/thyroidu...

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

Iron results indications

rt3-adrenals.org/Iron_test_...

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Thanks. GP monitors ferritin/complete count every 3 months. Haematology monitored B12 and folate every 3 months. Vitamin D monitored every 6 months with GP.

Also tested low for zinc, magnesium and selenium. But I don't want to get too confused with supplementing. Should I introduce each supplement every 2 or 3 weeks once I know which has worked?

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Yes, if it were me, I would add one supplement every couple of weeks and build up. I would choose to start with vitamin C then add in magnesium (you can also have magnesium baths if you prefer). Then add K2-MK7, as you are already taking D3 and it's a co-factor, while trying to sort out the B12 injections at local hospital then once on B12 add a good B complex.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Ok thanks. I already have vitamin C 1000mg left over from when I was taking iron and it is still in date so I will start with that. Unfortunately we have a shower but the magnesium spray I have is one I can spray on. Then the K2-MK7 with the D3 and then the B12, folate and B complex. So I keep the vit D the same strength?

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Read the info from the vitamin D council. I would work with your GP on vitamin D since he/she is prescribing quite reasonable loading doses.

vitamindcouncil.org/about-v...

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Sorry the GP prescribed me 800iu. I bought an oral spray to bring up vit D3.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Ok, well 800iu won't treat a mouse let alone a deficient human. I think you need a new GP!! How much vitamin D3 are you taking now? You could take 10,000iu for 3 months and retest.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

9000iu. I was going to ask GP today if I could get a re-referral to haematology but something else cropped up and I spoke about that instead. Will be going back about the vit D.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Yes, ask GP why they think your vitamin D levels have not risen sufficiently. Was your level below 30 nmol when diagnosed deficient because if so your GP should have prescribed loading doses from the word go. Definitely get refered back to haematology for iron infusion if possible. If you can't then make sure GP prescribes ferrous fumerate or similar 3 times a day and improve iron in diet too.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Yes they were below 30 when first found to be deficient.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Well point out to the GP that according to NICE guidelines you were not treated correctly in the first place.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Sorry what about the iron - I am guessing I can get an infusion done at haematology since it is below 50?

Nanaedake profile image
Nanaedake in reply to Leanne_j88

I don't know about the injection and whether local hosp will need the ampoule, you just need to find out. Ask your GP to sort it out for you. Don't be fobbed off by Dr telling you to go to reception to sort it out.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

No I definitely won't get fobbed off by GP or receptionist. It's gone on long enough.

Nanaedake profile image
Nanaedake in reply to Leanne_j88

YOu're going to havve to be insistent and persistent and make sure you read the NICE guidelines and quote them so the GP's know that you're on the ball as regards the most up to date guidelines.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Will do this. Thank you :)

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Gluten Free – is it safe?

glutenfreesociety.org/glute...

The cheapest and best way to go gluten free is to buy fresh fruit, veg and meat and don't buy any 'gluten free' packaged products from supermarkets.

Cut out bread, pasta, cakes, noodles and anything made with wheat. Try to buy veg and fruit in season because it's cheapest then. So you need a range of recipies that work for seasonal food. I use a steamer because I can put veg, meat, fish in the steamer and leave it to cook without effort. I also like stir fry's because they are quick to cook. I use a slow cooker and pop in a whole chicken before I go to work then it's done when I get home. I can use for stir fry the next day and then make a soup in the slow cooker from the bones. It makes about 4 days of food for 3 of us. I use sweet potato instead of regular potatoes for a little carbohydrate.

Gluten free list and advice from celiac.org

celiac.org/live-gluten-free...

This is another gluten free list to select from although it says to avoid soy but I think that fermented soy is ok, just avoid soy products and soy beans that are not fermented.

drperlmutter.com/eat/list-o...

Some people tolerate occasional gluten free oats which are low cost but you need to check whether the packet says gluten free as some oats are not.

Plain Greek type yogurt is good for deserts with fruit or nuts. I also use it in stir fries with a little Japanese soy sauce for flavour and a dash of vinegar but check the vinegar is gluten free because they are not all. Chinese soy sauce is not gluten free but Japanese soy sauce is - kikkoman and tamari are Japanese types.

For breakfast I have an egg or a piece of bacon or I make a yogurt pot with fruit, yoghurt, gluten free oats and nuts. Sometimes I have fish and salad or a little meat and cheese.

I shop in budget supermarkets and choose fresh, in season produce and cheaper cuts of meat. I use a slow cooker to make meat tender and then you can cook lower cost meats.

Leanne_j88 profile image
Leanne_j88 in reply to Nanaedake

Thanks :)

Nanaedake profile image
Nanaedake in reply to Leanne_j88

Good advice from SlowDragon below, read all the links.

jgelliss profile image
jgelliss in reply to Nanaedake

Nanaedake

THANK YOU !!! For the AMAZING chockfull of information's .

SlowDragon profile image
SlowDragonAdministrator

Your high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Typical posts with Low vitamins due to under medication including detailed supplements advice from SeasideSusie

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4 - similar to when your GP reduced dose

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

You are very under medicated and need immediate 25mcg dose increase. Bloods retested after 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

But with Hashimoto's first we must Improve vitamin levels, get Levo dose high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

Strictly gluten free diet extremely likely to help or be essential

If after all this FT3 remains low then, like many of us with Hashimoto's, you may need addition of small dose of T3

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne:


Tukadmin@thyroiduk.org

Leanne_j88 profile image
Leanne_j88 in reply to SlowDragon

Thank you Slow Dragon. Ferritin/complete blood count monitored every 3 months, folate/B12 monitored every 3 months when under haematology, vitamin D monitored every 6 months with GP. Will take on board gluten free diet but will get tested for coeliac first.

SlowDragon profile image
SlowDragonAdministrator in reply to Leanne_j88

See a different GP

Dec ferritin was dire

Insist on referral back to haematology for iron infusion

And/or

You will need ferrous fumerate supplements 3 x daily

Plus if you don't mind liver eat it once a week will help too

B12, make inquiries about getting injections in lunch hour at work

Folate is much too low

Supplementing good vitamin B complex daily (eg Igennus Super b complex) will help too

Lots of us also supplement sublingual B12 - eg Jarrow B12 lozenges

1000mcg dose. You can take 2-5 per day

Or plenty of others learn to self inject B12 and buy over internet. It's not acceptable for GP practice not to fit you in

Vitamin D - you need even more than 9000iu

Essential to add magnesium - calm vitality magnesium powder is cheap and easy to use. Start low and slow. Must be four hours minimum away from Levo

Vitamins are fire because you are so under medicated

You are highly likely to need T3

But get yourself strictly gluten free (it's not as difficult as it sounds)

Get Levo dose up and vitamins top notch first

I couldn't have made progress without this wonderful forum.

Selenium supplements can help too

Plus vitamin C good for adrenals

Leanne_j88 profile image
Leanne_j88 in reply to SlowDragon

Thanks. I plan to call GP surgery and say something along the lines of "Hi, I have been waiting 5 months to be fitted in for a B12 injection but you have not been able to. Since I have waited for all this time with low B12 symptoms I am looking to go down the route of getting it done at a local hospital (possibly) if this continues."

I am low in magnesium so no problem to add this. Do I take the D3 3000iu up to 12,000iu? It only comes as 3000iu or 1000iu and I don't want to be spraying the 1000iu 12 times!

SlowDragon profile image
SlowDragonAdministrator in reply to Leanne_j88

You could use 3000iu 4 sprays

They do a 5000iu too

Gluten free diet will help a lot

As will magnesium

Yes B12 sounds good - it’s a serious issue - you need it sorted

Plus you must get Levo increased

They wouldn’t leave a diabetic waiting

Leanne_j88 profile image
Leanne_j88 in reply to SlowDragon

Will do. Thanks, you've been very helpful :)

Nanaedake profile image
Nanaedake in reply to Leanne_j88

And when all this is sorted you might want to write a letter to your GP's practice manager and raise your lack of effective and timely care. Sounds like their system is simply not working.

SlowDragon profile image
SlowDragonAdministrator in reply to Leanne_j88

Two more things

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D. Retest after 2-3 months and twice yearly once you get to good level

Important not to take too much

Vitamindtest.org.uk £28 postal kit

Boohbette17 profile image
Boohbette17

Leanne_j88 ... not sure if you get a copy of my post reply in the thread so I re post for you . Good luck & keep in touch 🙏💞

Totally agree ! If I may jump in... besides levothyroxine until I got on cytomel did I not get close to "me", & AT THE SAME TIME I upgraded my diet. Most hypothyroid patients have sensitivity to gluten but also casein it's a protein in dairy . Using Dr.SaraGottfrieds' Protocol for hormone resetting,I lost weight and reduce my antibodies by half!! FOOD IS POWERFUL💪🏻 🥦🍎🍊🍋🥑🍓🍇🍌

Give yourself earnest effort in the food first approach ( avoid mental meds, my opiniom) and you will be amazed at your mood improvements!😊👍

HUGS🤗🌺

saragottfriedmd.com/what-to...

saragottfriedmd.com/ditch-t...

purplejuicy profile image
purplejuicy

Sorry If I’m repeating what someone’s said but I haven’t read all the replies...

I went through what you went through 2 years ago so I can relate.

I’m thinking hashimotos? Had your antibodies checked? If not please do!

B12, vitamin D, folate, iron test

Invivo GI map stool test will pick up leaky gut/bacteria/pathogens that may be causing a gut imbalance (very important in hashi’s)

I’d also think about seeing a functional medicine DR who can test yourself hormones as you may be low/high in oestrogen, progesterone, DHEA.

Seriously think about lowering T4 & trying T3 added in (saved me) your symptoms are common side effects of T4. T3 is the hormone you really need, again a functional medicine therapist/GP will say the same and help. You’re very under active which means you’re not converting that T4 very well. Zinc picilonate 25mcg can help with that conversion.

Also go gluten free (and dairy if you can manage it) that’ll help lower inflammation. Diet and exercise is key.

Hope that helps

Leanne_j88 profile image
Leanne_j88 in reply to purplejuicy

Antibodies both raised.

purplejuicy profile image
purplejuicy in reply to Leanne_j88

Gluten free is a must then. If you can follow the AIP diet for 4 weeks that’ll help determine what is causing easy gut too. LDN has brought one of my antibodies right down to almost nothing but still raised in the other which I was advised to work on leaky gut and cut out dairy (as well as GMO, soy & gluten) anything that causes inflammation basically.

Need a healing diet, fresh and hormone foods - no processed gack. Maybe add collagen, l-glutamine, probiotics, probiotics and b-vits to your regime too. Bone broth is excellent

Mumstheword175 profile image
Mumstheword175

I haven’t read all the replies so apologies if someone else has said this. I hadn’t realised that an under active thyroid can give you the same type of depression as having a baby.

In this I mean it is the only other time that depression is nothing to do with how you feel in life, but a mix up of your hormones that you have no control over.

I was seeing different doctors each time I went so the whole picture wasn’t picked up for almost a couple of years as my thyroid had completely stopped working in the end. I’d put on over four stone in five months after never having a weight problem before and lost the use of the right hand side of my body. They kept thinkzing I was upset with the weight and didn’t put the whole thing together.

Eventually one doctor looked through all the notes and explained that occasionally this happens and you have to be put on antidepressants to correct the imbalance or it gets worse. In some cases this is done too late (as in mine) and you end up being on antidepressants for life.

It is a pain, going forward you have to explain ‘I’m not depressed it’s a medical issue) but the benefits are immense.

It’s not just the worthlessness etc., that get corrected but your memory starts working and all those other things that confused you.

Don’t just take the first one they put you on either. Some put more weight on. I was put on citalopram which made me feel hungry once I started eating so you’d eat more than you wanted, stopped any sex drive and made me anxious. I took ages to realise it wasn’t the right one and am now on duloxetine and feel so much better other than the now six and a half stone heavier I am to where I was before this journey began. The difference being I am gradually losing it as I’ve lost that urge to keep eating, which really affected me.

Sorry for the length but I’m hoping that this helps you in your journey. You are not losing it, you are a good person, just the signals are screwed up because of your hormones.

Sedum profile image
Sedum

Hi Leanne

20 years ago, a top homeopath and qualified doctor, told me not to rely on a thyroidectomy and synthetic hormones to solve my problems. He said as I had a history of depression it was very unlikely meds were going to be able to stabilise my thyroid issues. He recommended really good supplemental nutritional support including all the trace elements and high levels of antioxidants, some homeopathic remedies, cutting out toxins and getting some help for real problems that were triggering depression.

20 years on I can tell you that that has all been effective. I didn't have the thyroidectomy, I didnt go on synthetic hormones and I did do all the positive things. I can't tell you I haven't had deep depressions along the way. But each time I emerged I was in a better place than before. I now have more energy than before, and feel less 'old' than before.

Complex PTSD which was all tied up with the thyroid issues, takes a lot to heal from, but I do not believe meds would have helped more. After all, apart from thyroid meds, the depression meds actually list suicide as a 'side effect' on the box. I would really recommend that whatever the blood numbers, use it as a way to look into some real, advanced supplement support, and look at all the things that might be acting as toxic to your body and your life. I do get blood tests to monitor things. Low Vit D3 can cause havoc so I suggest raising that gradually.

I wouldn't say this man was my guru, I have lots of sources I look into, but here is a place to start youtube.com/results?search_....

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