I am sorry to post again, I am about to start my letter to my GP and I am feeling a little upset.
I am 36 years old, 5ft tall and about 119lbs. 3 years ago I went through a horrible time in my life, my grandmother passed away and my brother became violent towards myself and other family members. He caused a lot of stress and anxiety and after an incident where I had to call the police I cut him out of my life. As a result my mother and sisters cut me off saying that he had been diagnosed with a personality disorder and that I should forgive him. I refused to because he caused my family pain and anxiety. A few months later I began with anxiety and panic attacks and soon became agoraphobic unable to leave my home. I had a tough year in 2013 so reluctantly agreed by the end of the year to try Mirtazapine/Remeron anti depressant as I wasn't sleeping, I was 84lbs in weight and felt terribly anxious. The medication even though a small 15mg dose helped and i started CBT and got my life back, I still struggled to do appointments alone and socialise but with hubby I was ok. Things settled and I was back out walking, exercising, taking my kids out... Life was good again. Then in summer of last year I started with the fatigue and felt my anxiety creeping back in, purely due to how exhausted and weak I felt. That's when my GP ran the thyroid tests as he suspected that's what I was suffering with. TSH came back within range at 5.35 (0.35-5.5 range) and FT4 11 (7-17). So I was just left to feel awful. I was exhausted so badly some days I just couldn't do anything but lie on my bed. This wasn't like me at all. It all started to increase my anxiety when I did go out alone or just with the children as I felt I would pass out or something, I found it scary. Slowly I became more scared to go out and the anxiety crept in. Then in September last year at another blood test I had a horrible panic attack in the nurses room and since then WHAM my anxiety was back. I hadn't had panic attacks or high anxiety in a long time so it was a shock.
Then in October after a year of bullying my son was struggling with school, he started with panic attacks due to the stress of this bullying, low self esteem and low mood. He told me he felt suicidal, he is 11. It broke me. Our GP saw him and referred him to the children's mental health team who refused to help saying I would be the best person to help as I had experience of anxiety myself. My GP hit the roof and my son slowly got worse to the point he would beg me not to leave him every morning at school, I would come home and just cry. Suddenly I was floored with dizziness, ground moving feeling, room moving feeling when I turned over in bed. I felt awful. My GP came out to see me as I took to my bed. He said I was suffering from extreme stress, I think he was right as I felt awful every day. My anxiety escalated due to all this stress. My GP came out a second time in December as the dizziness wasn't leaving me, I told him how ill I felt prior to this stress and the fatigue but he put it all down to the stress of my son, even though my ill health started well before that. He ran some bloods as long as my arm and told me they were fine, I had a print out and spoke to him about the results. He told me not to worry as he wasn't but he would repeat them all in the autumn of this year, this included my cholesterol and diabetes Hbac1 test.
In September 2015 my hba1c test was 38 (range 20-41 but range does go up to 48) he then repeated this test in December 2015 and it was 40. I queried this as it concerned me and he said no at 40 it's fine no cause for concern as it's within range. I have no family history of diabetes nor do I have a bad diet, I don't drink fizzy drinks, eat sweets or fatty foods. I have a healthy diet of no red meat, only chicken and fish, vegetables, complex carbs, oats every morning, green smoothies, fruit, nakd bars and little dairy now due to high cholesterol.
My cholesterol was total 6.9
HDL 1.6
LDL 3.9 Triglycerides 3.
He told me my cholesterol although high was not a risk at my age and he would re test in 9 months. He told me really not to worry as this was no reason to be causing me anxiety. I am just so worried, I do have high cholesterol on my mothers side of the family but not diabetes at all. Should I really not be worried? is it all just linked to my underactive thryroid?
So my thyroid TSH in December had gone down to 2.96 and T4 down to 10.2. GP said as the TSH was now mid range I was fine. He took the test at 1pm and he said that has no bearing on the result. He said he had no reason to repeat my thyroid again for at least 12 months. He is aware thyroid issues run right through my mothers side. So I went private with Blue Horizon this week and yesterday posted my results on a post on here. TSH 6.54 and FT4 had gone up to 14 which shocked me because it's always been between 10-11 on the NHS tests. Someone here replied and said that results differ from lab to lab, now is this true because I thought just ranges differed not the actual result because surely a TSH level is the same no matter the lab it's tested in?
So due to all of this fatigue, stress in my life which has now settled as I have counselled my son myself to cope with anxiety, these test results worrying me and not feeling well I am struggling with my anxiety so bad to the point I can't go to the GP. I don't want to ask him to come to my house again, he only did last month due to myself being dizzy and in bed for a week. I am so ashamed my agoraphobia is back, it upsets me because I take my children to school, cook, clean and maybe take my dogs out near my home but that's it. I will go to shops with my husband at the weekend but now I am back to only small shops. I did take my children to the cinema after Christmas and parks and I was proud of myself. It's just all this worry and fatigue for 8 months, it's wore me down and of course flared up my anxiety disorder again. I just feel I am back to square one with my anxiety because of all this. So ashamed right now I can't do appointments and worry about that every day. My husband says I am far too hard on myself I'm not having panic attacks thankfully they are rare but every day it's general anxiety and just fear of how I feel. My GP told me all the fatigue and dizziness must be my anxiety but I said to him, I am not anxious therefore I feel fatigued and weak, I am fatigued and weak therefore I feel anxious. He just doesn't understand that I had my life back, I had cut out the toxic people that hurt my family and my life was really happy again, I had recovered. Now all of this, and being left to struggle with the fatigue, taking care of my family, my son struggling.... it's been too much. My friend tells me I am amazing, every day I still take care of my home, myself, my children, pets..... she says I need to stop being hard on myself and realise how strong I am but right now I feel weak for having anxiety and agoraphobia again.
Sorry for this long ramble. I just needed to get it out. I am worried writing to my GP with my private thyroid results, expressing my concerns about my HBa1c and cholesterol results and asking for a telephone appointment won't be acceptable and he will think I am odd for not just going to see him.
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29 Replies
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The high cholesterol will be linked to your hypothyroidism, but you are a bit unusual in not having Hashimotos, there is some other cause for your hypot. Do you mind my asking what illness your family thinks your brother has? My guess, and it is only a guess, is that there may be a genetic link, not that u have the same condition as him, but his illness might give you some clues.
Has the dr checked your sodium and potassium levels, are they on any of the test panels you have?
My guess is that there is a physical cause for all this family anxiety.
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Obviously untreated hypothyroidism will be at the heart of a great many of your symptoms though ... sorry, i should have said that at thentop of my reply.
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My brother apparently has Borderline Personality Disorder, he had it from a very young age. He had issues growing up. I have been told I don't have what he has. I had an assessment as I have had anxiety for 3 years but mine was due to the trauma he put me and my family through. He was violent and turned up at my house threatening me and when my husband went outside to calm the situation he attacked him,police were called and it was all very scary. That is why I cut him out.
I have had anxiety in the past but I didn't have a good childhood with my brother being the way he is, he had violent outbursts as a child and attempted suicide often, it was a horrible environment growing up.
I don't think my anxiety has any kind of connection to what my brother has, as although he has anxiety it's all linked in with the BPD and he has some other mental health issues like depression and OCD, and as I said I was fine anxiety wise until the period of violence from my brother. For me my cause of anxiety was due to that, losing my family who decided to cut me out for not forgiving my brother and my grandmother passing as we were closer than I am with my own mother.
My potassium levels were 3.8 (3.5-5.3)
Sodium 135mmol (133-146)
Thank you.
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Of course u were absolutely right to refuse to see yr bro to protect yrself and yr son. My mother as a child saw a lodger hit her father and it scarred her for life. well done for being so strong. You did what you had to do at great personal emotional cost.
I am sure you are nothing like yr bro, but for example ocd has in one or two cases been linked to b12 deficiency, and depression and anxiety both link to b12 deficiency. That could be due to autoimmune gastritis, or a genetic problem in metabolising b vitamins.
Do u know why you might have low stores of iron? You Say your weight dropped v low, were you eating very little or were there some gut problems?
As u know, once u have any kind of psychiatric or psychological disorder, gps tendbto put everything down to that and forget about the physical.
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I was always no more than 90lbs. Malnourised as a child, we were all thin. Then in my adult years I just didn't have a big appetite I guess due to being underfed as a child. My diet was poor.
Anxiety when it started stopped me eating as my stomach made me feel sick all day with nerves. I dropped to 84lbs. I went on medication to help anxiety and it is also given to people who can't eat and it gave me a good appetite, and bigger waist line lol!!
I had heavy periods all my life so my GP thought my low ferritin was due to that but 3 years ago I went on the pill which lightened them a lot but still my ferritin kept dropping. He never investigated why other than tested me for coeliac which was negative.
To be honest I am wondering if my son is hypothyroid. I forgot to mention he is always saying he is cold, and he is about 10 stone and 5ft 3 tall. He is 12 next month. He gains weight so very fast and it started after he turned 10. He had an emergency operation for a twist down below and after that he suffered anxiety and intense weight gain. He gains about a stone in a few months. I told my GP that he has been eating healthy, does PE 3 times a week in school yet still gains. They didn't seem concerned and said he is going through early puberty and takes after his dad being stocky and tall.
I had the full blue horizon panel this week. I begged my GP in December to do a full panel including antibodies and he refused, he said my TSH in August was 5.35 and within range so I wasn't hypothyroid. My T4 was 11. Then last month the TSH was 2.93 and T4 10.2. He again said I was fine. So I went private. These are my private results>....
TSH 6.54 (0.27-4.20)
FT4 14.24 (12-22)
FT3 5.37 (3.1-6.8)
T4 Total 110.3 (64.5-142.0)
Anti - Thyroidperoxidase abs 11.0 <34
Anti - Thyroglobulin Abs <10.000 <115
Thank you for your help. I really appreciate it.
Julie
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you could blue horizon yr son .. the nhs won.t give him a full panel. i did this for mine, he had no antibodies, just a slightly raised t3, but it put my mind a bit at rest.
By the way, my son has also been talking v seriously abt suicide since the age of seven, due to high anxiety, it is v hard to cope with as a mother, and you are doing well to hold up esp with your heightened anxiety levels.
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Oh your poor son, it's scary isn't it. You hate seeing your children suffering when you know exactly how they are feeling.
Thank you
I forgot to mention
GP didn't check D as he said they can't at my surgery unless bone profile is off (it was fine).
Ferritin was 15 in August now 31 (I supplemented it, it's been low for 10 years).
Folate 19.9
B12 was 212 in August it's now 501 after I supplemented it myself, GP said it was fine at 212.
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ok so ferritin still very low, that may well link to part of your v high anxiety.
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Yes it's been low for over 10 years. Lowest was 8. I can't tolerate tablets so we tried spatone which didn't raise my levels. I now take a liquid iron and in 3 months it went from 15 to 31 so that's progress.
Can low ferritin cause anxiety? I am not anaemic as my hb is 15.
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just take extra d anyway .. we're in deep English winter.
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I take 1000iu a day of D3. I started 2 months ago.
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you could safely punthto 2000 daily in my view .. I,ll reply re the ferritin anaemia etc when i can get to the main computer which has some refs on it.
ok, so your history of malnourishment fits with other accounts I've read here, women who were hypo but didn!t have hashis .. there seemed to be quite a strong possibility that gastric problems or malnourishment could be the cause. Do you think you could be iodine deficient? Because you don't have antibodies you could supplement with this, especially if your diet has been low in milk and fish.
I googled anger b12 deficiency and some case studies came up which suggested for some people anger can be a feature. What was yr b12 when it was first tested?
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B12 was 212 in August last year. Now at 501.
I dont feel any anger? Anxiety yes but not anger.
Thank you.
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sorry, see this now... so it was quite low. the guys on the pernicious anaemia forum say it shoukd be 1000 so you might have a read over on that forum and consider taking it higher.
Important to rule out the Thyroid as an issue. However make sure the full Profile is tested and not JUST the TSH. You need TSH - FT4 - FT3 - Anti-TPO - Ant-Tg. FT3 needs to be good in range as there are more receptors for T3 in the brain than anywhere else in the body. Hence the connection. It could be difficult for you to help your brother under the circumstances of course.
Rule out thyroid for my brother do you mean? I don't speak to him and haven't in 3 years as he is a very violent person and caused myself and my children anxiety issues. See my reply above to a poster about the situation. My own father and gran cut my brother out for what he did to my family, ill or not his doctor said he had full control over his anger, he still knows right and wrong. Sorry just explaining why I don't speak to him.
Myself I have had a full panel with Blue Horizon this week.
My heart goes out to you. I know what family issues like that are like from personal experience. They want you to forgive your brother and behave, but they aren't so forgiving of you! I suffered a situation like this for years. (and I mean nearly thirty years) And, do you know, in the end none of it mattered - it just becomes the way it is, and the longer it goes on, the easier it becomes. " God grant me the serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference" has been my mantra for many years.
My advice, as an older woman who is at the other side of it, is to focus on your own little family, take care of yourself and them. Sounds like you have a good supportive husband, which is worth a very great deal.
Now, as to the thyroid issue, according to Dr Barry Peatfield, who is an expert on the thyroid - not a general practitioner (GP) in his book "Your Thyroid and how to keep it healthy" Page 214, there is a chart of TSH blood results which states that a normal range is 0.1 - 2.5. Below that is considered overactive thyroid i.e. under 0.1 and above that is considered underactive. So your ranges are well above that and no wonder you are feeling so bad. I should get the book. It has a wealth of knowledge and advice, especially as thyroid runs in your family, as it does mine. This forum is where I found the support and information to help myself 2 years ago.
That's right, exactly how I feel. The first year was hell losing my nan and then my mum and sisters turned on me because I wouldn't forgive him. The thing is he did this twice and terrified me and my children. One of our sons had therapy for 9 months after seeing his dad hit. It all happened so fast when he turned up at my house and my children witnessed what he did. I had toy and a stand and say enough is enough I cannot allow thus to keep happening. It was making me ill and terrifying my children.
My brother was hitting his own children and his dog. It was just horrific and he was scaring everyone. In the end I walked away and police told him to stay away from me or face court. He wrote on twitter and Facebook he was going to kill me. He's since apologised to me via message but I don't want him in my life. My father and grandmother have cut him out. My mother and sisters now miss me after 3 years and want me back but I keep them at arms length as they hurt me and my children walking away and resenting me for wanting to just take care of myself and my children.
I'm fine now and over it all but the first year was an incredible loss and shock. It's what started my anxiety disorder. I used to worry what if i had what he had because we're related. It scared me. I was diagnosed with anxiety and agoraphobia caused by all the stress and fear.
My husband is amazing and I love him dearly. He takes good care of us all. Were one very close family.
Thank you I just hope it's ok I write to my gp with my private results and he listens. I just can't face appointments at the moment. I need to work on getting back on my feet but all of this fatigue and ill health has scared me. I think most people would have found it hard. My son struggling and being so fatigued every day. I'm also cold all the time, tired; dizziness started 2 months ago that I've never had before.. I just get told I'm anxious when I wasn't. For a year life was good then this fatigue began and from then on I felt drained and anxious again.
I would strongly advise you to get that book - you will find a lot of answers, and reasons why GPs seem to know so little about Thyroid issues. I decided to go the natural NDT route, and found almost instant relief. I wrote an erudite 6 page letter to a GP - the one that I considered the "Maverick" at my practice, as to why I wanted it. I also sent a copy of the Blue Horizon results which showed me to be underactive, and as I see shaws has commented, I told him I was receiving advice from this group. But if I hadn't been prescribed it, I would have gone the self medicate route, which I have in addition to what is prescribed, as he could only prescribe so much and I needed more. It's a bit scary because we are so used to prescriptions and doing what Doctors say. If you want to know more about this route you will need to PM me. Personally I have had more help from the excellent members of this forum than any one else!!
Hypothyroidism does cause that feeling of the floor moving, particularly when you try to get up out of bed. It's quite disconcerting having to clutch at the furniture to get across the room, but easier to cope with when you know the cause. If it was me I would get hold of some thyroid meds and see if they help. You can always stop if you feel worse. Read up on the symptoms of overmedicating (fast hearbeat, insomnia, sweating, loose bowels, headaches) so that you know if you have over done it. People tend to start on 50mcg of Levothyroxine a day or half a grain of NDT (30mg I think) and increase every 2 weeks (assuming you don't feel worse).
I think you need to take control of your health for your family's sake, not rely on doctors who don't seem to know what they are doing thyroid-wise.
Ignore this message if you like, it's just my opinion.
I feel ground moving when I walk or even when stood still I suddenly go cold and feel I'm falling into the ground. I feel horrible when that sudden cold feeling hits. It's reassuring to know why that could be happening as it's not something I've experienced with anxiety before like my gp put it down to.
Nobody has mentioned gluten to you yet. Lots of us on here have gut problems, it is an extremely common symptom of hypothyroidism. The cause could be coeliac disease, but you said that you'd been tested and it came back negative. It doesn't really matter whether it was positive or negative. We can still be gluten intolerant and there is no test for that.
The biggest problem for us hypos, apart from gluten, is a lack of stomach acid. With low stomach acid, food doesn't get broken down adequately, so depriving us of nutrients.
There are some things that you could do that might make you feel better :
1) Go on a gluten-free diet. You must be absolutely ruthless about this. You can't be "a little bit gluten-free", it is all or nothing. Give it a trial for 3 months. You should be seeing benefits by then. If it doesn't help, then you can go back to eating gluten again. I saw benefits from going gluten-free within a week.
I have always had problems with getting my iron levels up. Once I went gluten-free my ferritin levels jumped up quite quickly. I'd been taking supplements for nearly two years by that time, and my levels still weren't mid-range. Going gf got my levels up to and slightly over mid-range quite quickly.
2) Read up on low stomach acid problems, and how to fix them.
3) Stop worrying about your cholesterol. Being hypothyroid makes cholesterol rise. Once you get treated for thyroid disease your cholesterol will lower itself naturally. Please don't take statins.
4) Always get thyroid and iron/ferritin testing done first thing in the morning, before 9am. Fast for 10 - 12 hours (drinking water is fine) before getting the blood taken. If you ever start taking thyroid medication (which I hope you do, because you are clearly hypothyroid), it must be stopped for 24 hours before getting blood taken.
5) You need thyroid treatment. If your doctor won't treat you, you could treat yourself. But it is a steep learning curve before people can do this. A really good book on the subject of the thyroid and how it works is :
Self-medicating is possible. But you need to know what you are doing, how to dose, what treatments are available, and where to get them from before launching into it.
I've been gluten free now 5 weeks. Not had a drop of gluten or wheat. Finding it pretty easy. My tummy does feel much flatter and less stomach acid and reflux. I wonder if it will help my ferritin?
How did it make you feel better going gluten free, just stomach and iron?
Also are the blue horizon tests as accurate? I did finger prick. Hoping my gp won't dismiss it. I've sent him a letter today 3 pages long explaining how I've been feeling, anxiety wise and physically. Expressing concern for my symptoms and my results such as the diabetes tests showing high. The range is 20-41 and my results have been 38 and now 40. No one's telling me why and I've no reason to be diabetic. No one's explaining anything to me and I swear it's also why I'm anxious.
Thank you for the great advice and links. I bought a thyroid book recommended to me here yesterday.
Julie
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I'm not having panic attacks thankfully they are rare but every day it's general anxiety and just fear of how I feel. My GP told me all the fatigue and dizziness must be my anxiety but I said to him, I am not anxious therefore I feel fatigued and weak, I am fatigued and weak therefore I feel anxious. He just doesn't understand that I had my life back, I had cut out the toxic people that hurt my family and my life was really happy again, I had recovered. Now all of this, and being left to struggle with the fatigue, taking care of my family, my son struggling.... it's been too much. My friend tells me I am amazing, every day I still take care of my home, myself, my children, pets..... she says I need to stop being hard on myself and realise how strong I am but right now I feel weak for having anxiety and agoraphobia again.
Lost and confused =(
angry letter to GP
