Very poorly newbie - Desperate for help

[Flossles]

Hello everyone...

I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so very hard. But, I'm going round in circles and feel as though my health and symptoms are never taken seriously, especially by doctors... I'm at my wits end and need help. I wont go in to the ins and outs of everything as there's so much and I also have EDS type 3 - Hypermobilty and multiple mental health issues due to complex trauma - meaning lots of my symptoms are similar to that of autoimmune disease. I'll try to give an overview from when symptoms started and what was going on in life, what drs did and results that I have so far.

I was fairly active as a child, I was out playing all day going on walks, bike rides, played netball and went swimming and then diving regularly. I then started getting sick at the age of around 9/10. I will note that it was from age 8 until just recently (age 29) that I have been exposed to crisis on all levels and extreme stress; Parents divorce and father leaving, emotional neglect, physical and emotional abuse, living in a hoarded unclean house, witnessing my Mothers physical and mental distress daily due to ill health and finances etc, bullying (secondary school), frequent sexual assault, self-harm and suicide attempts, financial abuse, disordered eating, drug and alcohol consumption from age 13-27, homelessness, unexpected bereavement of Mother)... I had it all. And the reason for mentioning this is that I know high stress levels play a huge part in causing a lot of illness, I wasn't aware of this way back then and even if I did there was nothing I could do to avoid or get out of the situations I came up against. And with that mentioned, I'll go on...

Age 9/10 the migraines started, sometimes I'd have one everyday. I was put on migraleave in the beginning and then age 11 (I think) propanalol, amytriptyline and other things I can't remember. I also had widespread body and joint pain from this age too with frequent sprained ankles, (can see this is from EDS now). Stomach cramps, constipation, diarrhea, anxiety, depression, weight gain, insomnia, and then the debilitating fatigue hit me age 12/13 and all of these symptoms got worse with more and more popping up. I had a brain scan, blood tests that I don't know what for at the time and was given different medications.

Age 14 I was told by a Locum Dr that it was Fibromyalgia, given loads of printouts and sent away not knowing what it meant or what to do. I was unable to attend secondary school because of both health and what was happening to me at home and being afraid of school. Age 15 I randomly started itching like crazy and was told it was/is Urticaria, it never stopped. At age 17 I was told by a physio I was referred to because of the neck/upper back pain and migraines that I have Joint Hypermobility Syndrome. Again, given a booklet and sent on my way but told to use the gym at the hospital... I didn't, I had zero energy and was so overwhelmed by all that was happening to me that I became frozen. The worst of my symptoms was the frequent and extremely violent migraines and then the joint pain and fatigue. Looking back although the fatigue was bad, it's not a patch on what it is today.

Fast forward a few years to early 20's, working as a support worker at the hospital, trying to make something of myself by attending higher education at college (wanting to become a paramedic, nurse or midwife) still living at home in a real living hell and in a long-term abusive relationship. I'm getting sicker and sicker. I also contracted Herpes whilst in this long-term relationship, had a breast reduction contracting Cellulitis whilst in hospital and had the contraceptive implant for maybe a couple of years - I never felt the same after all this happened.

Around this time at a G.P appointment the Dr casually told me I have an underactive thyroid from looking at blood test results I had previous to seeing her... The Dr who requested those bloods never told me! I didn't know what it meant but was told I'd need to take medication for it forever. I was prescribed 25mcg Levothyroxine and that was that. I didn't get any further info so I went home and looked it up online but didn't take it seriously. It was also around this time that my iron and vitamin D levels came back extremely low (I don't know how low, I was never told and didn't think to ask). I took the medication for years with no check ups on my thyroid levels (as far as I know) and I still carried on eating poorly, living in stress etc. The medication didn't do anything for me but I took it anyway.

2015 the year I moved to Leeds to make a new start and get help for mental health after having a serious breakdown. Before I moved in October, I had a G.P appointment with a Locum Dr who told me my thyroid levels were normal so I didn't need to take my medication anymore... despite being extremely symptomatic still. I didn't question this as I was in such a bad way and so much to deal with. I stopped taking thyroxine and started trying to help myself through diet but looking back it wasn't done properly and I still had disordered eating habits (also made through foods triggering me).

In my time in Leeds I've had further serious stress from things out of my control again, but now all those things have stopped and I can really focus on healing now. Since I've been in Leeds my physical health was too overwhelming to get help for, I had too much going on with my mental health to cope. I did have some appointments here and there, mostly for pain levels but was being offered prescriptions that only exacerbated the fatigue and so it seemed counterproductive to take them, I'd also had suicide attempts through overdose that left me in HDU and so didn't want anything potentially lethal in my environment. Last year despite being massively burned out I took up rock climbing to improve my mental health, it was a huge help and I was a natural. Having EDS meant a lot of over-exertion, more pain and more fatigue. But I persisted. I also cut out meat and dairy completely as well as gluten (which I was already avoiding). I also stopped taking B12 last August because it broke me out so badly! September last year I start getting what I think is a flare up again, worsening fatigue and pain to the point I can't go out for days. I'm still rock climbing though. Had some blood tests done and was told my iron was low and to take Ferrous Sulphate, she didn't tell me my levels, or that it need to be taken with vitamin C to aid absorption. Having taking them before years previously, I knew of the unpleasant side effects. I took them for a very short while and forgot about them. I was never told how long to take them or that they'd monitor my levels. Towards the end of the year I'm getting worse and have what I think was a viral infection or flu - I couldn't leave my flat for at least a week, I was napping and felt so unbearably weak. I also noticed my symptoms were SO much worse a week or so before my period and that my mental health took a nose dive around this time (despite doing alright the rest of the month).

March 2018 I had to stop climbing due to the crushing fatigue, pain, dizziness, blurred vision, costochondritis, mental blocks and brain fog... the list goes on... and on. I suspected B12 deficiency as I remembered I was trying to avoid B12 like the plague for what it did to my skin. I didn't realise just how important it is to the body and brain. I also suspected PMDD and estrogen dominance. I went to see a Dr to explain all this only to have her casually smirk and shrug saying "Sounds like PMS" she said she could test for diabetes and vitamin D. When I asked fir her to investigate and test for female hormones, she just said "Well we could but where would we start..." And so she didn't. She wanted to write me a prescription for antidepressants and I told her that's not what I wanted. I came away feeling invalidated and upset.

I then had some blood tests done not long after that by a Dr I spoke on the phone with. He requested B12, folate, thyroid, FBC.

I was contacted by the surgery to make an appointment because of the results. He mentioned my monocytes being below range, but only just so it was anything to worry about. And my TSH being 'slightly' raised'. My B12 was very low but he seemed to think because I'm in range then it's fine... again, despite being symptomatic and me explaining active B12 etc etc. He said about the TSH that he wasn't sure about it so given that I've been underactive before he wanted to refer me to an endocrinologist and test for TPOab in the meantime. He also agreed I shouldn't have been taken of the thyroxine years previous and that levels showed normal... because I was taking thyroxine!! *bangs head against wall. I told him I would then be paying privately to investigate Perniciuos Anemia/B12 deficiency as he didn't know what an active test is.

When my results came back for TPOab the same Dr called me and said they were positive and to start taking 25mcg again, he didn't tell me what the test and results meant. I went to get the prescription and started taking the meds. After only 3 days I had to stop because they made me feel even worse (I don't remember this happening when I took it before). I was even weaker, fatigued and in pain, along with having loss of appetite and constant nausea.

When I returned from my hols I had an appointment booked for 12th June. I told him what the thyroxine did and to PLEASE give me B12 shots! I printed off and took the NICE guidelines and more info but he said no but he'd look at the info I gave him. I asked if he could prescribe lactose free thyroxine as I noticed in the ingredients it contains lactose and I'm sensitive to many things and feel this could be one of them. He said it would be difficult but he'd try and get in touch. He never called back.

I'm now getting worse just like all the times before but I don't think I've ever felt this bad, I'm stuck in my flat most days absolutely exhausted.

I decided to look in to what a TPOab test is and find more answers myself. That's when I learnt what it means to have these antibodies and it indicates Hasimotos. I felt to angry for not being told. I came across hundreds of stories on here so similar to mine and this is why I'm so overwhelmed and feel let down, most of us in the same sinking boat crying out for help and doing all that we can with unhelpful G.P's. I decided to get more private blood tests, this time through Medichecks because of the unsatisfactory experience I had with Blue Horizens. I got my results back this week and so will post relevant results here including previous tests from G.P surgery and Blue Horizons. I wont post them all as there's a lot.

G.P results:

20/09/17 Serum ferritin - 12ug/L (10.00-322)

17/04/18 Serum total 25-OH vit D - 88nmol/L (75-250)

24/04/18

FBC Monocyte count - 0.19 10*9/L (0.20-0.8010*9/L)

Serum B12 - 267ng/L (211.00-911.00)

Serum folate - 7.5ug/L (5.40-24.00)

Serum TSH - 4.3miu/L (0.20-4.0)

Serum Free T4 12.9pmol/L (10.00-20.00)

17/05/18 Se Thyroid Peroxidase Ab conc - 299iu/mL (<100)

Blue Horizon results 22/05/18:

FBC Red Cell Width Distribution - 10.2 (11.6-14%)

Methylmalonic acid - 0.13

Reticulocyte count - 59 (50-100)

Iron - 17.9 (5.83-34.5)

UIBC - 31.6 (24.2-70.1)

TIBC - 49.5 (40.8-76.6)

Transferrin Saturation - 36.2(15-45)

Gastric parietal cell antibody - negative

Intrinsic Factor antibody - negative

Serum B12 - 216.8pg/ml (197-771)

Serum Folate - 8.41ng/ml (3.89-26.80) THIS WAS MEANT TO BE AN ACTIVE TEST!

Medichecks results 30/07/18:

Serum zinc - 15.2 umol/L (11-18 )

Selenium - *163 ug/l (65 -150)

TSH - 5.68 mIU/L (0.27 -4.20)

FT4 - 12.200 pmol/L (12.00 -22.00)

FT3 - 4.2 pmol/L (3.10 -6.80)

TPOAb - 77.3 IU/mL (0.00 -34.00)

Thyroglobulin antibodies - 14.100 IU/mL (0.00 -115.00)

Reverse T3 - 14 ng/dL (10 - 24)

Serum Iodine - 46 ug/l (40.00 - 80.00)

Active B12 - 41.900 pmol/L (25.10 -165.00)

Serum Folate - 8.36 ug/L (2.91-50.00)

25 OH vitamin D - 69 nmol/L (50.00-200.00)

Hormone Check Female:

FOLLICLE STIM. HORMONE 3.6 IU/L (Luteal 1.7 -7.7)

17-BETA OESTRADIOL *1895 pmol/L (Luteal 122 -1094)

LUTEINISING HORMONE *14.4 IU/L (Luteal 1.0 -11.4)

PROLACTIN 389 mIU/L 102.00 -496.00

Comments: Your luteinising hormone is high when compared to your follicle stimulating hormone. This raises the possibility of polycystic ovarian syndrome. PCOS can cause problems with light or absent periods, weight gain, unwanted hair growth and problems with glucose and cholesterol. If you would like to assess further for this then I recommend checking your polycystic ovarian syndrome profile or discussing it with your doctor as you may benefit from an ultrasound.

Your oestradiol is raised. There can be many causes for this including high BMI, alcohol consumption, stress and use of certain medications as well as a number of metabolic and pituitary conditions.

I had an appointment with a Dr who I've again never seen before today to speak about my results and to ask to get started on a lactose free T4 and further investigation in to female hormones. She said all she could do was request lactose free thyroxine on the script and would send for an ultrasound. I did go to her with all this info but I didn't find her helpful especially her comments. I don't seem to have PCOS because I still have perioids (despite me telling her they are irregular and I missed one this year) and I'm not overweight (I have had fluctuations with my weight) and that it wouldn't be helpful to send me for more tests because "It'd be turning you in to a patient then and where does it end" (I AM A PATIENT, I'M REALLY BLOODY ILL AND WANT GOOD HEALTH!) And that fresh air, exercise and a well balanced diet will help. I already know these things, I'm a huge advocate for them but when I'm too ill to get up and out of my flat most days to do those things then what!?

I'm so desperate for answers and better health. I have so many symptoms (you name it, I'll have it!) I just want to be able to work again,(haven't worked since 2014 because of all this), enjoy life and travel. I want a family one day, a family where I can do things properly and make up for all I went through and give my children what I didn't have. But it seems so far away, that I'll never be able to do these things. I don't know how I'll cope living like this for even another year... nevermind the rest of my life, it's already gone on for two decades! Things I'm doing: Cut refined and added sugar last Friday and going to follow a Paleo diet and possibly AIP if that doesn't help. Supplementing magnesium, sublingual B12, zinc, iron+vit C, Vit D3+K2, B1. I have also bought Izabella Wentz's books on Hasimotos and have read the very beginning of one but my concentration and brain fog is so bad. I do get out every now and then - I facilitate peer support groups with Mind and have started going to a gardening group. I also get out with my boyfriend once a week. But I really want to be able to exercise again. I'm going to try and get back to Yoga soon and plan to start Pilates properly.

I appreciate that this is a very long post (it's literally taken me all day to write) and there's a huge amount of information but I would be ever so grateful for any advice especially of specialists in my area and how to get hold of T3 and just a bit of support/cheerleading though these desperate times.

Ali x

[Peanut31]

Hi

The more experienced members will be able to help you further.

You have had an awful time, but you have come to the right place for support and help.

Sorry if I ask you information you have already posted.

A few things, 25mcg of Levothyroxine is a starter dosage for the elderly or people with heart conditions, it’s such a small dosage it can make you feel worse.

You need to be on a starter dosage of 50mcg of Levothyroxine, and then it’s increased by 25mcg each time after 6 weeks.

The only Levothyroxine brand that is lactose free is TEVA.

Asda pharmacy has the TEVA brand, but, before you let them take your prescription ask the pharmacy what makes of Levothyroxine they have.

A word of warning: lots of people struggle with the Teva brand, I was one. It made me angry, and I was biting everyone’s head off.

It’s good that you are gluten free with Hashimoto’s that will help with inflammation, brain fog, it did me.

With regards adding T3, it is advised (experienced members correct me if I’m wrong) that you need to get your TSH to 1 or below before thinking of adding T3.

For us to feel well and if on Levothyroxine our TSH should be 1 or below, T3 & T4 in the upper figures of the ranges.

Your vitamin D levels don’t look great. Are you taking a multi vitamin supplement? As normally they are not sufficient.

Best wishes

Peanut31

[Flossles in reply to Peanut31]

Hello, thank you for taking the time to read and reply to my post.

It already feels a relief finally getting my first post up, something I've wanted to do for years!

I've read that smaller doses can make people feel worse and I did say in my appointment today wouldn't it be better to have a higher dose and she said no, people have to start on a low dose because it can be a shock to the system causing palpitations (which I already have). Weeks ago when I went to the pharmacist explaining what had happened whilst taking the thyroxine this time she said to take half of the dose I was prescribed!... I didn't as it's still the lactose one so I'm still unmedicated.

I also told the Dr and pharmacist about Teva and liquid thyroxine but they didn't know of it and that particular pharmacist can't get hold of it so she gave me the details for two independent pharmacies who might be able to help. I plan to go to one tomorrow if I'm well enough.

I have also read a lot about Teva and in fact told the Dr a couple of months back I wanted to avoid it from what I'd read but now I know it's the only one that's lactose free. I wonder why it cause such horrendous reactions in people?

I wonder if I should just try and take the Wockhardt 25mcg that I have but take 2 a day instead of one? I know it has lactose in but I'm desperate. I do currently take antihistamines with lactose in but I'm trying to avoid it at all costs due to poor gut health. I just don't know what is making me so ill.

I'm currently taking 2500iu of D3 that has added K2 as they work together.

thank you for the info on taking T3, I didn't know that and so will look in to it when my brain can handle more info!

[lucylocks]

Hi

I am so sorry you have had such a very difficult time, it really is awful when we go to the Doctors and we are fobbed off. You have had so much to deal with and deserve help from them but they do seem to be totally useless at dealing with thyroid and hormonal problems.

I was left on a dose of 50mcg, levo for 18 months and I felt worse. No one told me I should have had my levo. increased to reduced my TSH below one. I finally got an increase as my TSH went over range again.

I then found this excellent forum and have received some great advice.

My daughter had a difficult time, she had all the symptoms of hypo. but because her TSH was "in range" they would not treat her, they gave her a diagnoses of CFS, In some Countries they treat if TSH is over 3,

My daughters TSH eventually went over the U.K. range so she finally got a diagnoses of hypothyroidism. She has tried levo. NDT, but neither suited her and she now self treats with T3, she does feel better, not 100% but better than she was, and like you, feels worse premenstrually.

Progesterone cream can help with PMS.

I cannot comment on your other results but it does look like your are oestrogen dominant which can cause the pre menstrual problems, and affect the thyroid, progesterone cream can help with this and you do need the PCOS looking into.

More experience members will reply, I will highlight, greygoose shaws

SeasideSusie

who will be able to offer advice.

Good luck and I do hope you can get the help you desperately need.

Best wishes.

[Flossles in reply to lucylocks]

Hi, thank you so much for your message. I know, it's just not on at all, it makes me so angry and I try to keep calm and rational but these are people's lives they're messing with!

Sorry to read you and your daughter have had a rough ride with it too. How are you doing now you've had your dose increased? Glad your daughter is feeling somewhat better than she was. Did she have to get her TSH below 1 before trying T3? That's what Peanut31 was saying (in the reply above this).

The Dr has said she'll organise an ultrasound but I'm just going to pay for more private blood tests doing to find out what's going on. I've suspected I have fertility problems for sometime now, I can't be 100% without proof but that's what I feel.

I've read about progesterone cream on here, what does it do exactly? Where do you put it?? :/

Best wishes to you x

[lucylocks in reply to Flossles]

Hi Flossles,

here is a link to progesterone cream, there is a lot of great info. there,

natprouk.com/107-2/

Maybe wait until you have had your scan before trying progesterone cream as if you do have PCOS then you maybe offered some treatment.

I am still trying to get my dose right, I am taking 125mcg. levo. but think I need to add a small amount of T3.

My daughter did get her TSH below one, but felt levo. or NDT was not right for her.

Some people cannot tolerate any form of T4 and find T3 suits them better, but it is always best to try levo. first, as once on the right dose it may suit you.

Good luck with your scan and other tests and do let us know how you get on.

Best wishes.

[Flossles in reply to lucylocks]

Thank you. I'll have a look later on

Do you feel better than you did before when you were on a much lower dose though?

Yeah I read that it's best to start on T4, I do want to get as much info and get clued up on T3 incase I have to take it. Was your daughter prescribed it or does she have to source it herself?

Thank you , I'll be posting results as and when I have tests etc.

[lucylocks in reply to Flossles]

Yes I feel better on the higher dose, still have some niggling symptoms, so I am thinking of adding a small amount of T3. Trying to get all my vitamins and minerals optimal first to see if that helps.

I remember when I was kept on 50mcg. for a long time and saying to my husband that I felt worse than before I was on it and he said "well don't take it then" I had to explain it is for life. I felt worse because I should have had it increased and I did not know then about the supplements we should take to help the thyroid meds to work.

Once I got on the supplements and higher dose of levo. I did improve.

My folate and Vit D recently dropped again, so I now have to work on getting these higher, then will look at the addition of T3.

My daughter buys the T3 herself or rather I do. Sounds strange but I get it for her birthday and Christmas present amongst other things.

If you ever need it send me a private message and I can let you know of a good supplier, I think a lot of members on here use the some one.

[Flossles in reply to lucylocks]

That sounds like a wise approach, I hope getting your vitamins and minerals up helps!

I don't think that's strange at all! I'd be so pleased to receive the one medication that helps me function and feel well for my birthday or Christmas! :')

Thank you for that, if it comes to it I'll send you a message to get the details. Is it expensive? I know that the cost over here is absolutely ridiculous!!

[lucylocks in reply to Flossles]

The price in this Country is absolutely ridiculous.

You can get it for around £20 for 100 x 25mcg. tablets plus postage from our contacts. They can be cut into halves or quarters for a smaller dose.

Give the levo. a go first and see how you go.

Let us know how your get on.

Good luck.

[Hele1]

Hi Ali

I’m so sorry for all you’ve been through. You’re so strong to have posted that today and not giving up. There are lots of experienced members on here who will come along to help you. It sounds like you’ve been massively let down by your doctors. I just wanted to send you a big hug xx

[Flossles in reply to Hele1]

Thank you Hele1 for your kinds words <3 x

[greygoose]

There's an awful lot to unpack there! But one thing that jumps out at me, if you are taking B12, you should also be taking a B complex. Not just B1. Your folate is a bit low, so you'd be best getting a B complex containing 400 mcg methylfolate. How much B12 are you taking?

I don't think there's much point asking 'what's wrong with me' until you've got your thyroid hormones in a better place. Low T3 can be absolutely devastating, causing all sorts of problems that you would never imagine. T3 is needed by every single cell in your body. And an awful lot is needed by the brain.

I think your GP is a little confused - aren't they all! - you should start levo on a low dose, but 25 mcg is beyond low, it's miniscule. 50 is a low dose, and the normal starting dose. But, they think they know it all! Just make sure you go back for a test in six weeks so that you get an increase.

I take it you've been reading on here for a while, so you know how to take your levo, and how to do a blood test?

You do need to raise your iron, though. Could you possibly eat liver once a week? That seems to work very well.

[Flossles in reply to greygoose]

Hi Greygoose, I know right, and that's only part of it all! I did look in to a b complex but then I came across some things that stated the levels can either be way too much or not enough. So I'm on a sublingual B12 now that I used to take, it's Metabolics B12 (adenosylcobalamin) - it says that 1 drop contains 76mcg giving 3040% NRV. I've been taking just the 1 drop but sometimes will have 4 or so. When I was first told about this company by a Kinesiologist he recommended I take 8 drops a day for 3 months... that was back in July 2016. So with that I planned to keep having this and get a seperate sublingual methylfolate from the same company (they're very good, no unnecessary fillers and crap). But with what you've said I looked to see if they do a sublingual Bcomplex and they do so I'll be ordering that I'd read on here a few times that it's advised to get B12 levels up before taking Folate??

I know, it's an extremely low dose and I said this but like you say they really do think they know it all. Do you think I should take the 25mcg or take 2 a day to make 50? I'm so worried I'll feel so awful again I couldn't function. I mean I'm pretty much not functioning well without it but I need to start somewhere don't I. It's so strange how it made me feel like that but it didn't when I took it years a go.

Yep, been reading for ages... come across lot of your advice too I know to take levo first thing on an empty stomach and not to have supplements especially those like magnesium, calcium etc until 4 hours later (or before). And to have bloods done in the morning before food (gives the highest TSH I've read).

I've only just started eating meat again (few weeks now), I never had liver before and I don't think I can handle it but I might give it a go. I am supplementing with iron+vitamin C.

Best wishes x

[greygoose in reply to Flossles]

I don't think people say to get your B12 levels up before starting folate. What is said is that you shouldn't start folate until all necessary B12 testing has been done. But you can start them both at the same time.

If you took two 25 mcg tablets a day, wouldn't you run out before your next test? Remember, you need to leave six weeks after changing a dose before testing. Do you have enough 25 mcg tablets to take two a day for the next six weeks?

[Flossles in reply to greygoose]

Ahh I see. I'll get that B-complex ordered today!

I haven't even been told to go back in six weeks for more tests anyway... :/ I currently have two packs of the Wockhardt 25mcg from May and I was given another prescription yesterday to try and get lactose free.

[greygoose in reply to Flossles]

Well, you could try taking 2x25 mcg and see how it goes. It's all trial and error, anyway.

[Flossles in reply to greygoose]

I've just checked the ingredients for the ones I have and as well as lactose they also contain sucrose... the very thing I'm trying to rid my body of and avoid at all costs! How frustrating Why must they add unnecessary crap!?

[greygoose in reply to Flossles]

You can't make a pill without fillers. It's just a question of choosing the fillers that do the least harm to the majority of people. But, there's always something that affects somebody.

However, the pill is so small, can you imagine the teeny weeny amount of lactose and sucrose it contains? Miniscule. Wouldn't affect the majority of people. But, if the fillers really do upset you, then you need to source liquid T4, but it's expensive and no guarantee the NHS would fund it.

[Flossles in reply to greygoose]

Oh I understand that, it's sugar that's the main culprit... it's in everything!

I looked in to liquid thyroxine and did mention it to the Dr. I'll see what I can get hold of!

[Nanaedake]

I did read all your post and I'm sorry you've had so many obstacles and problems. The main things I noticed were that your ferritin was low. Your ferritin is your iron store and this can influence how effective B12 is. B12 is low but not low enough for NHS to treat presumably so you can increase your own levels by taking a good quality sublingual (under the tongue) B12 and a good B complex. I would go for a gluten free diet rather than paleo because you have Hashimotos thyroiditis and gluten free helps many people. I would also improve your gut function by eating probiotic food like kefir or take probiotic tablets to see if they help.

[Flossles in reply to Nanaedake]

Hi Nanaedake, thank you <3 I'm currently taking Vitamin B12 as a sublingual but will be ordering a B-complex now. I also take iron+vit C. I tried being gluten free for years before now and it does help but it isn't enough and that's why I need to try Paleo or AIP. I need to lower my fruit intake also as this has been causing me a lot of bloating. I'll still eat fruits but will eat lower GI ones. Used to take probiotics and will start those again soon.

Best wishes x

[momindenver in reply to Nanaedake]

Have you considered another kind of food allergy? I believe that T-cell mediated food allergies (NOT IgE anaphylactic reactions)are underdiagnosed, and contribute to gut inflammation, which leads to nutrient absorption problems. For me, after I was diagnosed with irritable bowel syndrome and being on a low FODMAP diet, ( check out ibsdiets.org/fodmap-diet/fo..., after two years of trial and error, I discovered I am allergic to tree nuts. If I avoid nuts, my gut is much happier!

[silverfox7]

You have been through the mill but we are listening and I'm sure hoping to help you. I posted a comment about TEVA the other day that yes it upsets many but I've also heard that for people with Lactose problems it works well so may be giving it to people that don't is going against what it was designed for. I can't say that is the case, just something I've picked up on so don't rule it out completely.

Your thyroid will work better if Vit D, B12, folate and ferritin are optimal so getting your doctor to check those would be a good start. Always ask for a copy of your results so you know what is happening and also very useful yo put on here for advice on what to do next. Doctors often think that if tests are within range then they are fine but it's often where in the range that is important and this is very true for both thyroid and vitamin readings.

This forum is recommended by NHS Choices for thyroid dysfunction and its run by Thyroid UK who have an excellent site with loads of info that you probably haven't been told before so well worth a look. Shout out if anything you don't understand. Thyroid problems can be devastating and yet many doctors aren't always very knowledgeable on treatment or how bad we can feel but at least we understand and many of us have learnt more through the help given here so you are in good hands.

I also feel that getting this sorted then other symptoms can be helped as well. On the site you will find a huge list of symptoms, don't worry we don't get all of them but it shows how debilitating it. An be before proper treatment.

So I'm sure we can help. When you post any results you get always put the ranges, often shown in brackets after the result. Ranges differ from lab to lab so we need to know what yours or we would just be guessing.

I would also print a copy of the symptom list and tick those you have and may be show it to your doctor. Be useful for you as well as hopefully when properly treated you will see some improvement. Things move slowly in the thyroid world though so it will take time.

Tests are repeated every 6-8 weeks to see if you need a dose increase. It takes a full six weeks to get each new dose fully into your body and when results show you are still undermedicated then you should be given an increase usually by 25 mcg's then the whole process is repeated until the dose is correct for you.

So glad you have found us!

[Flossles in reply to silverfox7]

Hello, I'm so glad to have found you all too Thank you for the helpful information.

I haven't managed to get hold of a lactose free thyroxine yet. I hoped to get to a pharmacy I called up yesterday but I'm not well enough to and have too much to do today. I'll get my boyfriend to take me on Monday before we go to Wales. I don't know whether to just take the ones I have that have lactose in just to get started... I just can't handle how they made me feel in May but maybe it's because the dose is too low, or to high? I just don't know :/

I'm currently on supplements B12, D3+K2, B1, magnesium and zinc. I'm also going to start taking my borage seed oil, startflower and ashwaganda to see if that helps with the PMDD stuff because it's this time of the month that is literally unbearable, I just don't want to be here feeling like this - But, I know it's temporary (even if it is most of the month!)

I posted all my results and ranges in my original post Also taken lists of symptoms before because there are that many and because I live with them daily I kind of forget everything. The worst things at the moment are the fatigue as it's literally debilitating, constant dizziness and lack of balance, cognitive impairment, brain fog and constant mental blocks, slow speech and clumsy speech, breathlessness and chest pain and the visual disturbances (it's scary). Everything else is pretty awful but it's these things that make going anywhere extremely difficult.

Best wishes x

[JAmanda]

The advisors above know more than me - what I know is 25mcg did nothing, so I took 50 and began feeling better day by day but nothing really noticeable for 2 weeks. I’ve had nothing like the hassle you’ve had but just went back to docs for 6wk check and she said my 2.5tsh is normal - I said I don’t think so if I’m in levo, she disagreed but referred me to endo. In meantime I’m going to take 75levo and see how I feel. Oh, just started looking into the temperature thing - this also tells you if meds right, my temp is 35.5 suggesting I’m under medicated. Anyway I don’t know much but I’m going to read then do my own thing as Docs have been useless to date. I’ve had symptoms and high tsh for years and years.

[Flossles in reply to JAmanda]

Hi JAmanda, sorry to read you're experiencing rubbish doctors too. It's so draining! Thank you for that helpful information. I was going to just start taking the ones I already have (Wockhardt 25mcg) and take 2 but now I've noticed they have sucrose as well as lactose so it's a no from me. I'm trying to get all this junk out of my system!

Gahh, I can't stand it when they say "It's normal, or in range"... etc etc, they don't hear us THE PATIENT and our symptoms! Have you got an appointment with an endo now?

[Elainemawby]

Hi Flossles,

What a time you've had of it, I have total admiration for you that you're not giving up and you're learning to become your own best advocate. Apart from all the great advice you've aleady received here, have you ever had cortisol testing? With the long term severe stress you've been under I wouldn't be surprised if you also have low cortisol/adrenal fatigue which can add to your list of symptoms. There is plenty of advice available if this is the case.

I wish you the best of luck on your road to recovery.

Elaine. X

[Flossles in reply to Elainemawby]

Hello Elaine, thank you so much that's very kind of you to say <3

I have heard of it and was in fact going to do the saliva test but from what I read I didn't think there'd be much point when I know my body is physically and mentally burnt out from all the stress it's been under anyway. And the treatment is a case of lowering stress levels and diet and lifestyle changes, all the things I'm trying to do. Is it something you've tested for yourself?x

[Elainemawby in reply to Flossles]

There are suppliments you can take (adrenal cortex) to help but you would need the 4 point saliva test to know exactly where you're at first. There is also an adrenal cocktail you can take, would need to look up how to make it, which can be useful but you'd need to check sodium levels first as it contains salt. I have tested a couple of times but I'm a yo-yo pattern with very high then very low levels. I find meditation very useful for lowering stress which requires no energy output There are several apps you can get to help.

Elaine. X

[JAmanda]

3 weeks on, how are you doing? No endo appointment yet for me but I’m almost of the opinion the best advice is to be found here, supplemented with self-experimentation!

[Flossles in reply to JAmanda]

Hey JAmanda, so sorry for the late reply! I find it always takes me a while to get to people even with the simplest of responses because of brain fog and fatigue. Thank you for asking though 3 weeks on and I'm now on 50mcg of levo (Northstar), it's not lactose free but I don't think it's been doing anything to my stomach. I've been taking this for 2 weeks now and still feel the same but now it's so much harder to wake up in the morning and I find that I'm waking up at about 8:30am to take my levo and then going back to sleep for a couple more hours and when I do get up I'm really having to force myself up but am so exhausted, it's like I haven't gotten any sleep at all. I'm prone to having nightmares but every single night I've been having really vivid and most of them traumatic nightmares, really gruesome and ghostly or violent and I was even shot in one. I've also had really dry eyes and lips, my eyes felt so sore last week and I spent £30 on eye drops to get some relief when I was out shopping. I'm not sure that it's doing much for me but making me more and more tired and have the driest eyeballs in town! Haha. My chest and throat pain that was persistant seems to have mostly gone, I still find it hard to get full breaths but atleast it doesn't cause pain and burning anymore. I only have about a week and a bit supply left so need to get a Dr's appt asap really. Not sure when I should start taking 75 either. Still heard nothing about an Endo appt even though I was referred in May!

How have you been since taking 75mcg? When were you referred to Endo?

[Flossles in reply to Flossles]

Oh and I forgot to mention that I started taking liquid zinc and a B-Complex (intsead of B12 on it's own) and they made me feel SO much worse. I was getting constant dizziness and then nausea and loss of appetite and my palpitations were worse. Turns out it was both of those supplements and I wasn't even taking anywhere near the full dose! So please be careful people!